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SPREADING THE MESSAGE OF HOPE VOLUME 28, ISSUE 3 Summer, 2008 A Letter from the President… ABDA BOARD OF DIRECTORS Cathy Fornabaio PRESIDENT & DIRECTOR OF FUNDRAISING [email protected] Sandy McElgunn VICE PRESIDENT & HOTLINE DIRECTOR [email protected] Denise Corrado EXECUTIVE SECRETARY & CORRESPONDENCE COORD. [email protected] Sheryl Burke MEDICAL LIAISON [email protected] STAFF: EXECUTIVE DIRECTOR Jessica Nuzzo [email protected] 631-656-0537 www.behcets.com 1-800-7BEHCETS PO Box 869 Smithtown, NY 11787-0869 Greetings to our friends! Wow, what an inspiration it has been to watch Sanya Richards run in the Olympics. I followed most of the Summer 2008 Olympics, but of course, I’ve been watching Sanya Richards closely. She is so fast. It is true what they say about her, “Faster than a speeding bullet”. When you get a chance, check out her website at www.sanyarichards.com. It is full of great stories and even has an area to “blog” about Behçet’s Disease. unless people see the pain, the swelling, or other outward signs of Behçet’s Disease, they will not consider the fact that we are suffering so much. So now that Sanya Richards is all over the news, many relatives and friends of Behçet’s sufferers are telling us, “well, if Sanya can run the 400M how bad can it be?” I have even received calls from people telling me to ‘call Sanya’s doctor because he must have a cure!’ When I tell them I have been seeing “her” doctor for the past five years they seem completely baffled! A similar issue came up after Discovery Channel did a show An individual Bronze and a on a Behçet’s sufferer. While it Team Gold for the USA is an was wonderful that we could Annual Board incredible accomplishment for get some awareness out there, Meeting any athlete, but for one that especially in the United States, to be held suffers from Behçet’s disease many people that watched the seems even more amazing. I’ve October 16, 2008 show came away thinking that received many letters, e-mails, this one case was reflective of in etc. from Behçet's sufferers all Behçet’s sufferers. What did Uniondale, NY about Sanya. It seems that not come across enough was many have mixed emotions that symptoms can vary wildly about the exciting news of Sanya becoming from one sufferer to another and that remisan honorary Board member and a spokespersion is not the same in all. son for the ABDA. While at first I did not understand how one could feel this way, I As I’m sure many of you do, when I speak to began to realize what the issue was after non-sufferers, I can’t seem to stress enough speaking with several people. that Behçet’s Disease can manifest differently in every single person. Patients have mild, It actually has nothing to do with Sanya moderate, or aggressive cases. Some have Richards herself. It has to do with the lack of complex symptoms and Neurobehçets, while understanding about Behçet’s Disease. others may only have two symptoms. It is Unfortunately, as with any auto immune disDIFFERENT for everyone, and there is no ease, Behçet’s sufferers are faced with the single treatment that works for all. It is for everyday battle of the famous “but you look these reasons that we are taking the next step good” phrase from everyone. (I know this in our mission to EDUCATE. one personally very well.) It seems that continued on pg. 2 WHAT’S INSIDE SANYA RICHARDS is coming to the WALK for BEHÇET’S are you? • The 13th International Conference on Behçet’s Disease • Dispose of Those Drugs - PROPERLY! • How to Communicate with a Chronically Ill Person • Behçet’s Disease Hits Public Television! A Letter from the President continued... Dear ABDA... We are pleased to announce, that in October of 2008, in conjunction with Vision Media, the ABDA will be filming an educational program about Behçet’s Disease. In hopes to stress the fact that this condition can be so different for each person, we have decided to include a few stories/interviews with very different cases of Behçet’s. Viewers will see not only different ages and genders but varying degrees of severity. I hope that after this project is completed, many will start to understand Behçet’s Disease and how it can be so difficult to live with. It’s always wonderful to hear from our members… Please feel free to write to us in letters or e-mail! The project goal is to raise awareness and educate the public along with the medical field, so that the diagnoses level goes up in the United States and we can get hold of grants for research. You can read more about this important undertaking on page 15. The 2008 Walk for Behçet’s is just around the corner and we are so excited! Have you registered yet? We have so many new faces to meet, and several from out of state! It’s a great time to come together and share our stories and experiences, and once again confirm that we are NOT alone! It’s a magical feeling that I hope all of you will come and experience for yourself. If you are not able to join us, please consider donating or even registering (the same way a walker does) to collect donations for the event. We will be happy to send your T-shirt and program along to you after the event! We will also be holding our Annual Board Meeting during this weekend. It is a time of reflecting on our accomplishments and planning our future goals. We will be voting on our Board members and officers and will bring you all of the news, along with the Association’s 2009 goals and objectives in the next newsletter. I wish you all a beautiful Fall season, full of cheery colors and fresh, cool air, and I hope to see you ALL in New York on October 18th! Dear ABDA, Dear ABDA, I’d like to do more to help the ABDA. I’m not very good at fundraising, but I’m good on the computer. Who can I talk to about volunteering? Thank you! We’d love to have you! There are many things that we need help with here at the ABDA. There are many programs that we are interested in setting up in the future, but they all take good ol’ fashion man-power and we can not afford to hire staff yet. We do post “ads” in our newsletter from time to time (as you can see on page 15 today), but if you have a special skill-set or a special interest, and a genuine interest in helping those with Behçet's Disease, please feel free to contact our Executive Director, Jessica Nuzzo at [email protected]. She’ll be happy to put you to work on something that suits your passions! We are sorry if you have had trouble with our website. It was built with many powerful tools so that it could be a 24/7 resource for all of you! We hate to think that we can’t be there for you when you need us. If you ever have trouble with your password, and you are SURE you have the correct one, try these three things: 1) Type everything very slowly and with one finger. Yes, sometimes even the best typists can slip when we are moving too quickly! 2) Make sure your Caps Lock is not turned on. Remember that usernames and passwords can be “case-sensitive”. 3) Sometimes the server we use may be going through an update or system-wide refresh. (Especially if it is in the middle of the night). You may want to try again in a few hours. If none of these things work, you can always contact the webmaster at [email protected]. SUPPORT GROUP LISTINGS: Do you run a Behçet’s Support Group? The ABDA is setting up a listing area on our website where we can list your Support Group with its dates, times and locations. If you would like your Support Group listed, please use the form at: www.behcets.com/listingrequest. ABDA MEMBERS GET 15% OFF! Just in time! Need to send someone you love a Holiday basket, gift or flowers? Or maybe decorate your own Holiday table? Now ABDA members get 15% off at 1-800-Flowers. Just log on to www.1800flowers.com and use the code “ABDA” to get your discount. Remember to use igive.com or goodshop.com to access 1-800-Flowers and the ABDA will receive a donation! Are You Moving? Respectfully, Cathy Fornabaio ABDA President Sometimes I go to log in on the ABDA website and it does not let me in! I’m sure I’ve got the correct username and password. It is very frustrating. Can you please tell me why this happens? If you are moving or have moved, please contact us ASAP to update your address. You can call us at 1-631-656-0537, or log on to our -2- website and use the Contact Form. Premier members can edit their profile themselves by visiting their “My Homepage”. Thank you! Small Changes that could bring Big Results...Tips for a “Better You” These ideas and many more were found at Tesh.com: Try Stress Inoculation Training to Help You Deal With Stress What can make Behçet's Disease even worse? Stress! Unfortunately, no one has invented an anti-stress vaccine, but I want to tell you about the next best thing. It’s called Stress Inoculation Training, and it works! The idea is simple. You can’t change people, but you can change your reaction to them and actually build up a resistance to getting upset in the future. Here’s how, courtesy of MSN: Write down your thoughts. Let’s say your ex is always late dropping off the kids. You might think things like, “He does this just to get my goat,” or “She’s so selfish!” However, instead of dwelling on these ideas, write them down. Once they’re on paper, then you’re ready for: Look at the matter objectively. Think of yourself as an investigative reporter. Is there any evidence that he’s late on purpose? You might realize he’s never on time for anything, but even if it is deliberate, getting upset only hurts you. Rehearse a different response. This accomplishes two things: It trains you to see minor annoyances for what they are - minor, and it allows you to react calmly. So, practice saying, “I really worry when you’re not on time. It would help me if you’d call,” instead of “You never think of anyone but yourself!” Try These Tricks to Feel Happier, and Less Stressed Try these medicine-free stress-relieving tricks from Woman’s World Magazine: If you want to boost your overall HEALTH: Start singing! It doesn’t matter if your Kelly Clarkson impression makes dogs howl. A German study found that singing raises immunity-boosting white blood cells that protect the body from colds, flu, and stomach aches. The deep breathing you do while singing can also help lower the body’s blood pressure and heart rate. ries. The repetitive nature of knitting can help you calm down because doing something over and over again relaxes your brain. More Tricks to Ease Your Stress If stress is sending you into a tailspin, try these tricks from Quick and Simple Magazine. Form a fist. The next time you’re stressed, try this trick: Clench your fists tightly for five seconds, then open them. Why does this work? Because when a muscle tenses as much as possible, it becomes able to detense completely. Basically, clenching and releasing your fists is kind of like pushing an internal “reset” button on your body, which helps you relax. If you want to feel HAPPIER: Try dancing. Why would this help? Because studies show that dancing releases anger and stress by triggering the production of mood-lifting endorphins. If dancing isn’t your thing, try working in the garden to feel happier. Researchers at the University of Bristol in England discovered that breathing in certain “friendly” bacteria found in soil activates the mood-elevating brain chemical serotonin. Look at something blue, like the blue screensaver on your computer, or a blue pillow in your living room. Rutgers University researchers found that blue triggers the production of a calming brain chemical. According to Dr. Bernie Siegel, author of 101 Exercises For The Soul, since blue is the color of the ocean and the sky, we automatically associate it with the serene feelings that come with being out in nature. The final pill-free cure is for STRESS. Grab some knitting needles. Harvard Medical School researchers found that knitting, crocheting, sewing, or needlepoint are as effective as meditation at triggering relaxation. Why? Because the activity requires all of your concentration. You don’t want to poke your finger with a needle, which prevents you from thinking about your wor- Help someone. Being kind to others produces a rush of feel-good chemicals in the brain. That’s according to the book Stress Free For Good. That endorphin surge boosts your mood. So help a little old lady cross the street. Or offer to watch your neighbor’s kid while they run to the store. Awareness & Fundraising... Using your talents or hobbies to raise money and awareness! Photography, I love it. I think I enjoy taking pictures because I love to “make memories”. OK, so I don’t actually make the memories. I suppose I just preserve them. I’ve always loved taking pictures. I remember annoying friends and family to “get together for a shot” before we called it a day, etc. But inevitably, when they had that perfect memory later, they would thank me! Recently, my 7-yr old daughter was in a musical at the local Regional Performing Arts Theatre. She and 50 other children under the age of 18 put on an AMAZING show called “Seussical Jr.”. The children rehearsed several times a week for two months before the show opened and wow - you could see how hard they worked! I knew that the parents would want to remember this important event, so, with the theater-owners permission, I went to several shows and shot the kids during their me at my e-mail below. I also wrote this: mike checks and even during the performanc“Many of you have offered to compensate me es from the balcony. for the time and materials involved in creating The end product? Each child went home with these memories. While I will not accept coma sheet of “head shots” that I took of them in pensation for these images, please consider costume, individually, on the beautifully col- making a donation to the American Behçet’s ored stage, as well as a “cast photo” of the Disease Association to support the fight group they were in. I also had about 600 (edit- against Behçet's Disease. This disease can ed down from 1200!) pictures that I took at the affect children like ours and I am walking in October to try to help find a cure.” live performances. Now what? I couldn’t print all of those pictures for everyone, and I didn’t feel comfortable charging money for them (although so many parents kept asking me if they could buy a CD of the images from me). When the parents e-mailed me for the images, I e-mailed back the link to my walk page for them to donate on. So, the moral of this story is. I shared my passion and hobby with others while raising I sent a note to all of the parents when I distrib- money for a great cause. What are your pasuted the headshots I printed at Costco (my local sions? Put them to work for a good cause discount warehouse - $.37 each!) and on it I today and see how great it feels! explained that I had these 600 pictures and if they would like a copy of the CD, please contact By Jessica Nuzzo -3- “I Need Help, Not Suggestions!” How to Communicate with a Chronically Ill Person An Informative Book For Patients, Caregivers, and Physicians by Ashley Montclair, Ph.D. tions showered endlessly upon PCIs. Excerpt from Introduction Several varieties of the above are described, along with true stories. Persons with Chronic Illnesses (PCIs) In American society, Persons with Chronic Illnesses (PCIs) are frequently neglected, even abandoned, by families and friends. We are told that we are not keeping busy. We are told to shape up. We are told many things by people in the healthy community. For centuries, PCIs have been defined negatively. But in this book, the healthy, dubbed “Non-Chrons,” take their turn. They include relatives, caregivers, friends, pastors, strangers—in short, anyone who has not experienced chronic illness or who mistreats PCIs. Non-Chrons sometimes have absolutely no idea how to relate to a PCI. They are apt to make totally ignorant pronouncements, implying that we are either stupid or simply imagining our severe medical conditions. It is a plea that Non-Chrons take the time to listen, quietly and non-judgmentally, to PCIs. It is a guidebook for Non-Chrons PCIs can show an excerpt to a Non-Chron and say, “See? This is what I mean.” It affords PCIs an opportunity to help NonChrons interact more productively and learn to empathize. Best wishes to all of you who read the book. It is categorically not pseudo-inspirational or “flowery,” but rather, a discourse on behavior. It is not an essay on my personal medical problems with CFS. Deliberately kept short, it is printed in 14 point type for ease of reading. The subject matter expresses and elucidates common feelings and problems of PCIs who are so ill and disabled that they cannot work. Note that the term “invalid” is not used, for its second meaning, “in-valid,” renders us non-persons. Some of my ailments may be mentioned, but only as foundational examples for the often loutish behaviors of the healthy. The main focus is on the unhelpful “Have You Tried” and “Why Don’t You” sugges- I do not presume to speak for all PCIs. What This Book is Not First, the content identifies with the emotions and experiences of many PCIs. The book is a complaint on behalf of yours truly and other PCIs. It points out negative behaviors of Non-Chrons. While requesting better behavior from Non-Chrons, most PCIs, even those who are extremely ill, recognize that human relationships require giving as well as receiving. PCIs can give back in creative ways. (The final chapter details how.) Every PCI has different experiences and reactions. Some may not be those described here. However, the main idea is to improve the attitudes of Non-Chrons. The book is not a medical monograph. (I have a Ph.D. degree, not an M.D. degree.) I am a PCI who suffers from a painful and disabling condition I’ve had for over 10 years—Chronic Fatigue Syndrome (CFS). I have struggled personally with all the problems presented here. This is not merely a plea for “gimme.” In addition, some content may apply to persons with terminal illnesses or mental illnesses. Even overstressed caregivers may benefit. Purpose of The Book Some PCIs have the strength to pursue gainful employment. They are indeed fortunate, but their difficulties are not the same as those we very ill PCIs have. As members of a culture that insists on overwork and stress, ignoring and stigmatizing severe illness, PCIs tend to be marginalized, misused, and treated as idlers. with their talents, their time, and their resources. Instead, it’s directed at those who act appallingly and who do not contribute to the well-being of PCIs. It is not a doctor-bashing work. Increasingly, physicians are becoming better informed about chronic illnesses. With the imminent retirement of the Baby Boom generation, chronic conditions will have to receive more emphasis. Fortunately, I have an outstanding physician who understands both my illness and my personality. Unfortunately, not all PCIs have doctors who try to get to know them and provide meaningful support. However, there are many excellent doctors who give first-rate care. The intent is not to lash out at all healthy folks. VERY IMPORTANT! Many healthy persons do not exhibit the behaviors of the Non-Chrons in these pages. They are fine human beings. They show concern, give of themselves unstintingly, keep in touch with the isolated chronically ill patient, and are generous -4- Excerpt from Chapter 1: Chronicles of “Have You Tried” Part I: Ignorant Medical Advice “Case Studies” of Persons Offering Hokey (and Dangerous) Remedies Some of the most exasperating problems any PCI may have with Non-Chrons are what I’ve dubbed “Have You Tried.” Three examples: “Have you tried this herb?” “Have you tried this naturopath?” “Have you tried exercise?” Such questions and unoriginal thoughts are more than irritating. They are simplistic, offensive, and not helpful in the least. They go hand in hand with “Why Don’t You”— e.g., “Why don’t you get a job?” or “Why don’t you try this new clinic?” Most gallingly, the issues Non-Chrons so facilely raise are alternatives any sick person would already have either explored or considered investigating. Upon hearing such questions, the PCI wants to shout at the offender: “You moron! Don’t you realize I’ve already thought of that?!” Because they are such an important element of this discussion, “Have You Tried” and “Why Don’t You” have been separated into two categories, each in its own chapter: 1. Dim-witted medical advice 2. Ludicrous employment advice. These sections recount egregious examples (by no means all!) of my encounters with the well-meaning but ill-informed. During the first four years of ailing with CFS, I was very patient. But by the end of the four-year mark, my tolerance for this repetitive, ceaseless blather from NonChrons had ended. Bear in mind that I feel lousy all the time. Is that a legitimate excuse? Yes. Am I an advice-giver myself? Yes, about Social Security (SS!) Disability and fraudulent disability insurance companies, which I’ll mention peripherally. The discourse here is intended to be educational. Names have been changed to protect the contemptible. Non-Chron: “Aren’t you rejecting people’s advice out of hand, when it might help?” Dr. Montclair: A couple of years ago, there was a program on TV about people with terminal illnesses. (Note: I hope to be around for a long time, arguing with Social Security and helping PCIs.) On the program, a man with terminal cancer intelligently and pointedly remarked, “I will not get involved in the rescue fantasies of other people.” While it may appear laudable for lay persons to attempt to help, it can be hazardous--even fatal--to follow their non-professional advice. “Why don’t you go on this diet?” or “Have you tried this new therapy?” can actually hurt patients or aggravate their illnesses. Here are some dangers that can result from the use of so-called “natural” health products: Interaction of herbal substances with medication--e.g., for high blood pressure. Contraindication for the patient’s specific condition or for other health problems the patient may have. Conflict of the substance with certain foods—e.g., grapefruit or lettuce. Lack of FDA regulation. The quality and amount of the substance cannot be accurately determined. it is so intellectually demeaning. A woman I know with Stage 4 cancer was asked this question—in fact, was bullied with it, right as her illness was worsening. When a person is diagnosed with a chronic illness, obviously, one of the very first things he or she usually considers is whether to consult another physician, clinic, or diagnostic facility. “I’ve already thought of that!” or “I’ve already done so!” are answers one wishes to yell at Mr. S. O. Anna, the Surgery Promoter. She is a welleducated woman I’ve known since graduate school in the 1970’s. We still correspond annually, even though I haven’t seen her for many years. Several years ago, when she found out via a Christmas card that I have CFS, she actually called on the phone. She tried to persuade me to have an operation on what is known as the Chiari formation, a structure at the base of the skull. This surgery was somewhat of a fad at the time. Some patients had an alleged Chiari malformation operated on and supposedly experienced improvement of CFS, fibromyalgia, and other conditions. However, the procedure is not covered by insurance. It is experimental, expensive, and extremely dangerous. In some cases, permanent paralysis has resulted. Undaunted, Anna said, over and over, “You should at least have an MRI.” Insurance will not fund an MRI for this or for CFS, nor will I gamble my life on such outré invasive surgery. Lisa the Celebrity. Several years ago, an article appeared in the paper about a star named “Lisa” (here, under a pseudonym). She claims to have had CFS and was allegedly cured via natural potions. Numerous persons sent me the clipping. Lisa professed to be completely healed of her CFS within three years. How? By means of a “holistic” or “natural” course of therapy. The Medical Advice-Givers Maybe the treatment worked. Maybe she got over the CFS on her own. But as a celebrity, Lisa has status. And being a Hollywood type, she would never subscribe to allopathic methods—i.e., traditional medicine. To be acceptable to a movie or pop star, a cure is required to be an exotic herbal regimen. It would be completely politically incorrect for a modern celeb to say that a traditional allopathic doctor cured his or her illness. Mr. Second Opinion. “Why don’t you get a second opinion?” is a familiar question to PCIs. Its odious nature lies in the fact that Non-Chron: “Aren’t you discounting the value of alternative treatments? They work for some people.” Potentially fatal effects on organs and blood—e.g., blood thinning, which can cause death, especially during surgery. And now: Presenting the first group of harmful Non-Chrons: -5- Dr. Montclair: I am not saying that no one is ever “cured” via unorthodox methods. But trying to force them upon a patient is stupid and sadistic. Sometimes people whose outlandish recommendations I try tactfully to reject ask angrily, “Don’t you want to get well?” Duh! Of course I do. When I politely decline their foul nostrums, they say, “You’re giving up.” No, I’m not! But that doesn’t mean I have to chase after each faddist remedy, do what these semi-literate persons advise, or even appreciate it. Will, the Patent Medicine Guru. He and his wife, members of the church I attend, have a daughter, Barbara, who has CFS. She’s in her 40’s. She had onset because of sheer overwork. She was toiling away at her job 60 hours a week and is a single parent, divorced twice from abusive husbands. Her parents have been raising her daughter, who is now a teenager. Mind you, Barbara never comes to church! One Sunday, her father Will, a tall man with a heavy-handed personality, came up to me at church. Very suddenly, and without even saying hello, he blurted out, quite harshly, “You have to try __ [whatever the product was]. It’s only $35, and it’s helped Barbara.” Without another word, he stomped off. I knew that if I waited two months or so, he would no longer bring it up. As with all faddish concoctions, the appeal would fade. To my knowledge, Barbara has still not been to church, and Will has said no more about this faux “cure.” © 2007 by Ashley Montclair, Ph.D. All Rights Reserved. No portion of this book may be reproduced in any form—e.g., electronically, through the Internet, or via written publications. About the Author Dr. Ashley Montclair is the pseudonym for a real Person with Chronic Illness. She has an earned Ph.D., as well as an M.A. and B.A. (Phi Beta Kappa). Before becoming ill, she taught in several fields at university level for many years, including language. Contact Information for Purchasing the Book Persons who would like a copy, please send your request to the following address: Dr. Ashley Montclair 439 Kendall Ridge Court West Monroe, LA 71292 Enclose $5 donation (cash or money order) for postage and printing. Q “Ask the Doctor” is not intended as a substitute for the advice provided by your own physician or other healthcare professional. You should always consult your physician to discuss specific symptoms and conditions. The views expressed in this column are the author's. Readers are advised always to consult their doctor for specific information on personal health matters. The naming of any product or therapy in this column does not represent an endorsement by the American Behçet’s Disease Association. Q Is Behçet’s always genetically linked? I cannot find any trace of middle-eastern descent in our family. There is also no trace of other autoimmune disease anywhere." A Behçet’s has a genetic component, especially in endemic areas like around the Mediterranean, especially eastern parts and the far east. However this only explains some of the cases and a lot of patients have no family members or ancestry in these areas. Genetically linked diseases or genetic risks are overly discussed in the media. When we talk about a true genetic disease we mean as an example Down’s syndrome, where there is a clear genetic problem leading to symptoms. None of the chronic, especially rheumatic diseases are genetic diseases in that sense. Genes only explain some of the association and make us think in a certain direction but there are many other pieces of information we need to consider. Even in breast cancer, where the strongest gene connections have been described, these genes explain less than 20% of the breast cancer cases. Q I've heard that many Behçet’s Sufferers have the gene "HLA-B51". Can you explain to me what this is? I went for genetic testing and I do not carry this gene. Does this mean that I may NOT have Behçet’s after all?" A Depending on what population is studied, some patients with Behçet’s have the HLA B51 marker. However it can be seen in a certain percentage of the normal population also. So not every person with a positive HLA B51 has Behçet’s and certainly not all patients with Behçet’s have a positive HLA B51. It is again one of the things to consider in the whole picture of disease manifestations and when we make the diagnosis. Behçet’s is a clinical diagnosis, if you have the symptoms, and other common causes of these have been ruled out, you have Behçet’s, whether you are positive or negative for HLA B51. I keep hearing that Behçet’s is supposed to "get better" as you get older - but in speaking with others with the disease, I have yet to find anyone who has become anything but worse as the years go on. Can you please clarify what is meant by this statement? A Large cohort studies that have looked at and followed patients over1020 years have shown that most patients with Behçet’s get better over time, meaning they have less symptoms, or their symptoms get less severe. Up to 80% have so few symptoms left that it is sometimes difficult to even diagnose Behçet’s. In addition most do not require daily medications to control their symptoms. Having said this, if there is certain types of involvement, CNS or vascular especially, and sometimes eye involvement, which are all more severe manifestations of Behçet’s, the improvement rates can decrease. There is an inherent bias when patients contact patients online or thorough patients’ support groups, as patients who are doing well are rarely in these forums. Because of this, there is a selection towards patients not doing well, which is understandable. Up to 20-30% of patients, even in late disease, but especially so in early phases, may not be doing well at the same time. This bias towards sicker patients searching for treatment options and voicing their concerns, is the case with any disease that has online or off line support groups. WANT TO ASK A QUESTION? Readers who wish to ask Dr. Yazici a question may do so by visiting the Behçet’s Syndrome Center area of our website at: www.behcets.com, and clicking “Ask the Doctor”. Yusuf Yazici, MD Behçet’s Syndrome Center NYU-Hospital for Joint Diseases 246 East 20th Street, Suite102, NY, NY 10003 Because Dr. Yazici receives so many questions, it is impossible for him to personally respond to every one. If your question is selected, look for Dr. Yazici’s response in an upcoming “Ask the Doctor” article in the newsletter. 646-356-9400 -6- The 13th International Conference on Behçet’s Disease Pörtschach, Austria, 24–27 May 2008 The 13th International Conference on Behçet’s Disease was attended by more than 160 delegates, and 138 abstracts were presented orally or as posters. Neuro-Behçet’s Professor Adnan Al-Araji from Stoke in the UK gave an overview of central nervous system involvement in Behçet’s disease. The reported incidence of neuro-Behçet’s varies around the world, but overall it seems that around 10% of BD patients will develop it. Neuro-Behçet’s can be classified into parenchymal and non-parenchymal types. The former involves the brain stem and central areas of the brain and spinal cord and represents about three-quarters of cases, while the latter mainly manifests as intracranial hypertension. Only about 10% of cases of headache in BD patients are attributable to neuro-Behçet’s; most are due to migraine and tension headache associated with disease flares. The disease course can be relapsing–remitting, primary progressive or secondary progressive. Acute parenchymal disease is treated with high-dose steroids and disease-modifying drugs such as azathioprine, methotrexate or anti-TNF agents. Cerebral venous thrombosis is treated with anti-inflammatory drugs and anti-coagulants. Cyclosporine should be avoided in neuro-Behçet’s if possible. Biologic agents are used in severe, resistant cases, but the duration of treatment needed is unknown. There is a need for evidence-based treatments, and a NeuroBehçet’s Study Group has been established. A group from Japan presented follow-up data on the treatment of chronic progressive neuro-Behçet’s disease with infliximab.[1] They showed that 14 weeks of infliximab treatment could prevent neurological progression in patients resistant to methotrexate by reducing levels of interleukin-6 in the cerebrospinal fluid. They then followed five infliximab-treated patients for up to 2 years; all of these patients were smokers. In the three patients who were able to stop smoking IL-6 levels were low (<20 pg/ml), with or without further infliximab treatment, while levels remained high in the two who continued to smoke irrespective of treatment. It appears that smoking is a cause of resistance to treatment in chronic progressive neuro-Behçet’s. Eye disease Professor Shigeaki Ohno presented data on the trends in ocular lesions associated with Behçet’s disease in Japan.[2] The number of new cases of BD has been decreasing in recent years, and the visual prognosis of patients with eye disease has improved since the introduction of infliximab. Whereas BD used to be the most common cause of uveitis and intraocular inflammation in Japan, it is now in third place behind sarcoidosis and Vogt-Koyanagi-Harada disease. Of 113 patients with ocular manifestations of BD treated with infliximab, 75% showed marked improvement after 6 months; average visual acuity increased and the average number of ocular attacks had fallen from 3.74 to 0.75. In addition, use of cyclosporine and steroids was reduced and there were only two serious adverse events. Turkish researchers also looked retrospectively at patients treated with infliximab for eye disease.[3] Ten patients used infliximab for a median of 14 months and, although their mean visual acuity remained stable, the number of ocular attacks per month decreased significantly. For relapse of sight-threatening panuveitis, a Greek study found that a single infusion of infliximab acted faster to reduce inflammation than either intravitreous trimcinolone or high-dose intravenous methylprednisolone.[4] Interestingly, Iranian researchers found that BD patients, especially males, with ocular involvement had higher serum levels of TNF-alpha than did patients without ocular involvement, suggesting a role for TNF-alpha in disease expression.[5] A German group retrospectively analysed data on 45 patients with ocular involvement in Behçet’s disease treated with interferon-alpha for a mean of 34 months and 32 patients treated with cyclosporine A for a mean of 48 months.[6] Fewer recurrences occurred in the interferon-treated patients, and their final visual acuity was better than that of the cyclosporine-treated patients. Four patients were able to discontinue cyclosporine treatment compared with 12 for interferon. An Iranian pilot study of rituximab in 10 patients with longstanding ocular disease resistant to cytotoxic drugs and steroids showed a significant improvement in the Total Adjusted Disease Activity Index, with significant improvement in oedema of the retina, disc and macula after 6 months.[7] Visual acuity and retinal vasculitis also improved, but the results were not statistically significant. -7- Given the high cost of drugs such as rituximab and infliximab and the need for aggressive treatment to prevent blindness in patients with ocular lesions, researchers in Iran also looked at combinations of cytotoxic drugs.[8] They found that combination therapy of pulse cyclophosphamide, azathioprine and prednisolone was effective in improving visual acuity, posterior uveitis and retinal vasculitis in the long term (up to 5 years). Oral, genital and skin manifestations A study carried out in four Greek hospitals looked at the spectrum of mucocutaneous manifestations of Behçet’s disease in 202 patients between 1991 and 2007.[9] Around 64% of patients initially presented with oral aphthous ulcers. During follow-up, 65% of male patients and 51% of females had genital ulcers, while more females than males had erythema nodosum (78% versus 43%). Genital ulcers seemed to be more common in these Greek patients than in Lebanese, Turkish and Korean patients, but similar in frequency to German patients. For the evaluation of oral ulcers in BD patients, a Turkish group has developed a composite index that takes into account patient-derived factors such as pain and functional disability as well as the number and duration of ulcers.[10] There were several reports of different treatments for oral ulceration. A prospective study in Egypt used twice-daily sublingual tablets of interferon-alpha as a preventive therapy in 21 BD patients, 16 of whom had major aphthous ulcers.[11] After a median follow-up period of 13.5 months, the frequency of ulcers decreased significantly from an episode every 28 days before interferon to once every 61 days after addition of interferon; the duration of aphthosis fell significantly from 9.5 days to 4.6 days. They reported that the cost of this treatment is not very high. A Korean group found that topical tacrolimus applied twice daily for 2 months was effective in reducing the frequency and number of oral ulcers, as well as pain scores, in 15 patients with treatment-resistant recurrent ulcers.[12] A promising alternative option was presented by Portuguese researchers.[13] In a preliminary study, they told 17 patients with active oral ulcers to take a probiotic yogurt containing Bifidobacterium lactis twice a day and assessed their ulcers 3 weeks later. Both the number and duration of attacks were decreased in 10 patients and increased in six, while the frequency of attacks was decreased in nine and increased in eight. Lactobacilli seem to have immunomodulatory effects and decrease secretion of pro-inflammatory cytokines; however, larger studies and longer treatment periods are needed to determine the true potential of this therapy. Other promising topical therapies reported by a group in Iraq were zinc sulphate mouthwash and nigella sativa oil.[14][15] Thrombotic complications Professor Francisco España from Spain spoke about the endothelium and thrombophilia in Behçet’s disease. Endothelial dysfunction associated with vasculitis can lead to thrombophilia. Thrombophilic factors that have been shown to be associated with thrombotic complications of BD include factor V Leiden mutation and the prothrombin G20210A mutation. Inflammation and coagulation are closely related, with a vicious circle whereby prothrombotic factors increase coagulation, which leads to increased pro-inflammatory factors and thus increased inflammation. The protein C pathway is important in the process, and activated protein C is reduced in patients with thrombosis. Defective fibrinolysis is also associated with thrombosis in BD. The fibrinolytic inhibitors thrombin activatable fibrinolysis inhibitor (TAFI) and plasminogen activator inhibitor-1 (PAI-1) are increased in patients with BD, but only TAFI is higher in patients with thrombotic complications than in those without. Screening for these various factors could help to assess the individual risk of thrombotic events in patients with BD. An Italian group reported results of research on endothelial progenitor cells (EPCs).[16] These cells seem to be involved in maintaining vascular integrity and are altered in conditions such as diabetes and atherosclerosis. Circulating EPCs were found to be greatly reduced in BD patients compared with controls, suggesting that impaired endothelial repair contributes to vascular damage in BD. A “controversial discussion” was held on the subject of anticoagulation after thrombosis in Behçet’s disease. It was noted that there are no guidelines for screening for vascular involvement in BD. The primary pathology of venous thrombosis in BD is inflammation of the vessel wall, so the main priority is to ensure that immunosupression is adequate. Additional anticoagulation may help to prevent progression and recurrence of thrombosis in some patients. The recurrence rate is highest in male patients, especially those with the factor V Leiden or prothrombin G20210A mutation. However, the additional benefit of anticoagulation is probably small and is not supported by strong evidence. Paediatric manifestations Professor Isabelle Koné-Paut from France gave a lecture on Behçet’s disease at the paediatric age. She defined paediatric BD as disease that meets the criteria for BD before the age of 16 years; it resembles the adult disease but has a stronger genetic component. In juvenile BD, the first symptoms appear before the age of 16 but the criteria are not met until later. The symptoms of BD in children can overlap with those of other rare diseases or of more common inflammatory diseases. In one international survey, onset of PBD occurred between the ages of 1 and 15 years, with 9–12 being the most common age of onset; both sexes were affected in equal numbers, but boys generally had a more severe course. The causes may be infections, toxins or genetic factors, but genetics are very important in the cases with very early onset. Most cases of familial BD have childhood onset. Treatment recommendations are generally the same as for adult BD, but most of the drugs used are not licensed in children. Colchicine is generally well tolerated and can prevent relapses of uveitis. Corticosteroids are highly toxic in children, so the minimum effective dose should be used and growth hormone may be needed to prevent growth retardation. Azathioprine is effective and well tolerated and can be steroid-sparing. There are some case reports of low-dose thalidomide being effective in treating mucocutaneous lesions. There is little experience of using interferon in children; some case reports in uveitis exist, showing a steroid-sparing effect and ability to stop treatment, although long-term relapse is a possibility. Anti-TNF agents are used to treat juvenile arthritis and Crohn’s disease, but experience in PBD is limited so far. The PED-BD cohort study is a prospective study supported by the French Ministry of Health to define the natural history of PBD. Charts are reviewed annually to follow symptoms and treatment, and samples are collected to analyse DNA and biological data such as C-reactive protein. About 50 children have been included so far, and the organisers are keen for more people to become involved. Research in Morocco found that neurological involvement was common in children with BD (16%) and carried a poor prognosis, especially if there is parenchymal CNS involve- -8- ment.[17] A Turkish study found that around 3% of cases of neuro-Behçet’s had paediatric onset.[18] German researchers reported successful treatment with interferon-alpha in two boys aged 14 and 15 with severe treatmentresistant BD with CNS involvement; one patient had complete remission and the other showed marked improvement.[19] Pathophysiology and basic science A group of researchers in London investigated the healing of oral ulcers in Behçet’s patients.[20] They found that during periods of active ulceration, BD patients fail to increase secretion of epidermal growth factor (EGF) and transforming growth factor-alpha (TGF). These factors produced by the buccal mucosa are important in wound healing. In addition, levels of EGF receptor are high during remission and low during active ulceration, possibly as a result of infection, thus compromising the healing process. Also in the mouth, a Turkish group found increased levels of the salivary peptide HNP 1-3 in BD patients, especially in more severe disease; this peptide has antimicrobial properties.[21] Korean researchers looked at the cytokine profile in cutaneous lesions of BD.[22] Expression of IL-6 and TGF- was increased in BD skin lesions. However, expression of IL-17 was not increased in the BD lesions despite being high in serum from BD patients and in skin lesions of patients with psoriasis. This work casts some light on the localised pathogenic mechanisms in BD skin lesions. Researchers based in the Netherlands and the UK, noting the clinical and cytokine profile similarities between BD and Crohn’s disease, investigated three specific NOD2 (CARD15) polymorphisms known to be associated with CD.[23] None of the three variant alleles was found in patients with BD. In fact, two of the three alleles were less common in BD patients than in controls, suggesting a possible protective role for these variants.[24] Meanwhile, a Turkish group reported polymorphisms of an IL-18 promoter gene associated with BD.[25] Work in the UK added weight to the argument that BD is autoinflammatory rather than an autoimmune disease by showing that two genes regarded as masterswitches for autoimmunity are not associated with BD; indeed, one of the genes seemed to be protective.[26] This argument is also supported by the efficacy of interferon-alpha in BD, which could otherwise be seen as paradoxical given the immunostimulatory effects of interferon.[27] Interferon-alpha is known to induce autoimmune diseases such as systemic lupus erythematosus, psoriasis and thyroiditis, but a response rate of 80–90% has been reported in BD. Disease assessment The Behçet’s Syndrome Activity Score (BSAS) is a patient-completed assessment tool designed for use in research and clinical practice. It takes about 2.5 minutes to complete and consists of 10 questions relating to oral and genital ulcers, skin lesions and current disease activity. A US study in 67 patients showed that the BSAS correlated well with the assessor-completed Behçet’s Disease Current Activity Form (BDCAF).[28] Further external validation in other settings is needed. Patients with BD have a high incidence of chronic streptococcal infections before diagnosis, and a Korean group found that those patients with a high titre of antistrepsolysin O were more likely to have a history of tonsillitis and less likely to have genital ulcers than other patients.[29] They suggested that in these patients, ASO titres could be used to assess disease activity and antibiotics might be effective in treating BD symptoms. Tunisian researchers found that serum levels of B-cell activating factor (BAFF) were higher in patients with active BD than in those in remission, suggesting that this might be a marker for disease activity.[30] In patients with active disease, a positive correlation was found between BAFF levels and skin lesions. New international criteria Professor Ahmet Gul from Istanbul introduced the session on the new International Criteria for Behçet’s Disease (ICBD). It is important to diagnose BD as early as possible in order to start treatment to prevent longterm damage and improve quality of life. However, developing criteria for diagnosis and classification is difficult because of the multi-system nature of the disease, geographical variations and the existence of different subsets of patients. New biological markers are becoming available but are hard to include in criteria. For diagnostic purposes, criteria need to include as many BD patients as possible, but this may result in the inclusion of patients who do not have BD. Fereydoun Davatchi from Tehran presented the new ICBD criteria. Between 1946 and 2003, 15 sets of BD criteria were developed; the best known of these are the ISG criteria published in 1990. Validation studies have shown these to have a good specificity but a poor sensitivity and accuracy, leading to the decision in 2006 to develop new criteria for diagnosis of BD. In the new criteria, two points each are given for genital aphthosis and eye lesions, with one point each for oral aphthosis, skin lesions, vascular lesions and positive pathergy test; three points or more indicates BD. In validation studies in various settings, the new criteria have been shown to have a sensitivity of 96.1%, a specificity of 88.7% and an accuracy of 93.8%. They have been presented at several conferences and published in a textbook. Publication in a peer-reviewed journal will follow, as well as further papers defining the individual components. EULAR recommendations There were two presentations on the new EULAR recommendations for the management of Behçet’s disease (published in the Annals of Rheumatic Diseases in January 2008). One presentation covered the literature review on which the recommendations are based,[31] while the other described the nine recommendations.[32] Of 137 articles that met the inclusion criteria, only 20 were randomised controlled trials. Of the nine recommendations, only three (those for eye involvement, joint involvement and mucocutaneous involvement) are based on category I evidence (randomised controlled trials). Robust data on the management of vascular, gastrointestinal and neurological involvement were lacking. The recommendations need to be validated in different countries and settings and will be extended and updated as new evidence becomes available. In the discussion, delegates expressed concern that the recommendations had been produced by EULAR rather than the ISBD and that the experts involved in their development were limited in number and were predominantly rheumatologists. Looking to the future In his lecture on new perspectives in Behçet’s disease, Professor Hasan Yazici from Turkey made a plea for more hypothesis-based inquiry into BD, more external validation of disease clusters and more basic scientific work on venous endothelium. He proposed that researchers should be looking for ways in which BD differs from the well defined autoinflammatory disorders and that the criteria used for classification and diagnosis should be tailored to subspecialty and ethnic/geographical background and should be dynamic in time. Closing the conference, Colin Barnes expressed some disappointment that no randomised controlled trials of treatments for BD -9- had been presented and no objective outcome measures had been used. He hoped that by the next conference, there would be fewer descriptive studies of the incidence and manifestations of BD, with a move towards well designed treatment studies and close co-operation between clinicians and scientists. Copyright the Behcets Syndrome Society UK (www.behcets.org.uk) written by Clare Griffith. August 2008. References 1. Kikuchi H et al. Clin Exp Rheumatol 2008; 26 (Suppl 50): S-42, Abstract I5. 2. Ohno S et al. Clin Exp Rheumatol 2008; 26 (Suppl 50): S-39, Abstract H7. 3. Ozyazgan Y et al. Clin Exp Rheumatol 2008; 26 (Suppl 50): S-39, Abstract H8. 4. Markomichelakis N et al. Clin Exp Rheumatol 2008; 26 (Suppl 50): S-30, Abstract E9. 5. Akhlaghi M et al. Clin Exp Rheumatol 2008; 26 (Suppl 50): S-40, Abstract H11. 6. Krause L et al. Clin Exp Rheumatol 2008; 26 (Suppl 50): S-39, Abstract H6. 7. Davatchi F et al. Clin Exp Rheumatol 2008; 26 (Suppl 50): S-37, Abstract H2. 8. Davatchi F et al. Clin Exp Rheumatol 2008; 26 (Suppl 50): S-28, Abstract E2. 9. Vaiopoulos G et al. Clin Exp Rheumatol 2008; 26 (Suppl 50): S-35, Abstract G8. 10. Mumcu G et al. Clin Exp Rheumatol 2008; 26 (Suppl 50): S-35, Abstract G6. 11. Assaad-Khalil S et al. Clin Exp Rheumatol 2008; 26 (Suppl 50): S-33, Abstract G1. 12. Roh JY et al. Clin Exp Rheumatol 2008; 26 (Suppl 50): S-35, Abstract G7. 13. Vieira M, Vaz Patto J. Clin Exp Rheumatol 2008; 26 (Suppl 50): S-36, Abstract G10. 14. Shariquie KE. Clin Exp Rheumatol 2008; 26 (Suppl 50): S-34, Abstract G4. 15. Shariquie KE et al. Clin Exp Rheumatol 2008; 26 (Suppl 50): S-35, Abstract G9. 16. Marcolongo R et al. Clin Exp Rheumatol 2008; 26 (Suppl 50): S-11, Abstract B15. 17. Alaoui FZ et al. Clin Exp Rheumatol 2008; 26 (Suppl 50): S-32, Abstract F1. 18. Akman-Demir G et al. Clin Exp Rheumatol 2008; 26 (Suppl 50): S-32, Abstract F2. 19. Koetter I et al. Clin Exp Rheumatol 2008; 26 (Suppl 50): S-43, Abstract I6. 20. Hagi-Pavli E et al. Clin Exp Rheumatol 2008; 26 (Suppl 50): S-9, Abstract B9. 21. Mumcu G et al. Clin Exp Rheumatol 2008; 26 (Suppl 50): S-11, Abstract B16. 22. Lee K et al. Clin Exp Rheumatol 2008; 26 (Suppl 50): S11, Abstract B14. 23. Kappen JH et al. Clin Exp Rheumatol 2008; 26 (Suppl 50): S-14, Abstract B24. 24. Kappen JH et al. Clin Exp Rheumatol 2008; 26 (Suppl 50): S-14, Abstract B25. 25. Keskin F et al. Clin Exp Rheumatol 2008; 26 (Suppl 50): S-12, Abstract B19. 26. Wallace GR et al. Clin Exp Rheumatol 2008; 26 (Suppl 50): S-15, Abstract B28. 27. Kötter I et al. Clin Exp Rheumatol 2008; 26 (Suppl 50): S-30, Abstract E7. 28. Forbess C et al. Clin Exp Rheumatol 2008; 26 (Suppl 50): S28, Abstract D14. 29. Oh SO et al. Clin Exp Rheumatol 2008; 26 (Suppl 50): S26, Abstract D8. 30. Ben Dhifallah I et al. Clin Exp Rheumatol 2008; 26 (Suppl 50): S-27, Abstract D13. 31. Hatemi G et al. Clin Exp Rheumatol 2008; 26 (Suppl 50): S-29, Abstract E4. 32. Hatemi G et al. Clin Exp Rheumatol 2008; 26 (Suppl 50): S-29, Abstract E3. Alternative Medicine: The Art of Reiki One member’s experience with this alternative method of treatment… by Cathy Fornabaio In March of this year, I found myself overwhelmed with the amount of “stuff” I had going on in my life. The stress was coming from both a personal level and professional. As many of you know I have a very aggressive case of Behçet's Disease. Behçet’s has manifested in about every possible place it can in my body. I have tried many of the medications since I was diagnosed in 2001. Many did help but for a limited time and then they seemed to stop working. In speaking to many of our members, I know this happens to be more common than not. At this point, I had tried everything I thought possible to get off of the methylprednisolone. I take 16 mgs a day. This has been altered many times throughout the seven years, increasing the dose when I would flare and then weaning back down as the disease started to quiet down. I have had much success with cytoxan chemo therapy. I have done cytoxan for about 18 months straight, for two separate time periods. It has helped me a lot, but I felt that I wanted to give my body a break, due to the fact that cytoxan kills off both “good” and “bad” cells caused one to be more at risk for different types of cancer. So for the past two years, I have only relied on Solumedrol IV infusions to help me get through a bad flare. Unfortunately, it started to become a monthly treatment. At times when I would get a treatment and continue without one for 5-7 weeks, I would start to flare. I can not seem to go more than six weeks without my body starting to flare up again. Of course, these monthly infusions of Solumedrol are affecting my body in negative ways as well. I have osteoporosis. My endocrinologist tells me I have the bones of an 80 year old woman (I am thirty-something) and that is with being on a bone density medication for the past seven years. Also, I have had both cataracts removed. I am starting with avascular necrosis in my left hip and in my left knee as well. I have steroid induced diabetes. I struggle everyday to lose weight, I can not seem to do so. With all of this in mind, I wanted so much to try and get this disease under control so that I can stop the monthly infusions. Also, I have read about all the medications in my body can produce toxins. I started out by doing a GI cleanse which did help me. I then had heard about detox foot soaks. I searched for a practitioner in my area. While making a ton of calls, I had the fortunate chance of meeting a very special person. Daisy Coss. Daisy is a reflexology practitioner. This wasn’t what I was looking for but then again maybe it was. Daisy and I talked for about an hour the first conversation we had. Daisy had suffered a few years back with fibromyalgia. So Daisy understood where I was coming from. I made an appointment for the reflexology. Once I arrived at Daisy’s office, we talked some more. That was when Daisy mentioned that she also offers a Reiki detox as well as the reflexology. Not knowing much about Reiki, I asked some questions and heard how the Reiki has basically cured Daisy of her fibromyalgia. I decided to give it a try. Like I said, at this point I would try anything that would maybe help in getting me off these horrible steroids. By the way, I have a love/hate relationship with the steroids. I know that they have saved my life many times, but by the same token, I am not sure that they are not killing me slowly. After receiving such positive feedback about one Behçet sufferer’s success with acupuncture, we’ve decided to run a series on alternative medicine. It seems as though many members are looking to other methods of healing after feeling overwhelmed by the medicines that run their daily lives. While the ABDA does not advocate any particular method of alternative medicine, we do promote supplementing your prescriptions with something that may promote “inner” health After the two hours of treatment, I felt wonderful. I felt less stressed, I was thinking very clearly, and my entire body was in less pain. I left Daisy’s office with some instructions on how to start doing Reiki on myself. These positive symptoms seemed to last for about ten days. When I started to become overly stressed, and every joint seemed to ache and I had twenty mouth ulcers, I went for another treatment. Again, the outcome was incredible. I started doing Reiki myself in between my treatments and I have been able to keep that non stressed, happy, positive lifestyle. I have since taken the courses to become a Reiki Master myself. I don’t think this is something I can do on a regular basis for others but I wanted to learn everything I could about this alternate treatment. I have since been able to cut my pain medication from 120 pills a month to 75 pills. I also have reduced my monthly IV infusion from 1000mgs a month to 500mgs. Along with that, I can go to about seven weeks until I am ready for another infusion. I have not had an outbreak of mouth sores in over two months. I have started to live differently. I am very positive and happy. I do not get stressed easily. I also do not fear like I used to, now I know it will be OK. I know I still need to make more progress, but I am headed in the right direction. I know soon I will be able to get off of the steroids for good. I have since told Daisy, The Reiki Master, Reflexology Practitioner and Aesthetician, that sometimes when I walk into her office, I see a halo over her head. Of course when one finds hope, they want to share this with all that can maybe find relief in the same treatment. This is a little information about Reiki. Please feel free to email me [email protected] or Daisy on her website: http://www.merchantcircle.com/business/Hol istic.Body.And.Skin.Care.Rockland.County. NY.Day.Spa.845-356-3771 and well-being. We hope these segments help you to understand a little more about different types of alternative medicine and aid you in making a decision if any one of them might be right for you. We’d appreciate any feedback you have and, if you have a personal success story involving alternative medicine, please share it with us and our many members whom it might help. You can contact us at [email protected]. - 10 - What is Reiki? The International Center for Reiki Training A Brief Overview Reiki is a Japanese technique for stress reduction and relaxation that also promotes healing. It is administered by "laying on hands" and is based on the idea that an unseen "life force energy" flows through us and is what causes us to be alive. If one's "life force energy" is low, then we are more likely to get sick or feel stress, and if it is high, we are more capable of being happy and healthy. The word Reiki is made of two Japanese words - Rei which means "God's Wisdom or the Higher Power" and Ki which is "life force energy". So Reiki is actually "spiritually guided life force energy." A treatment feels like a wonderful glowing radiance that flows through and around you. Reiki treats the whole person including body, emotions, mind and spirit creating many beneficial effects that include relaxation and feelings of peace, security and well-being. Many have reported miraculous results. Reiki is a simple, natural and safe method of spiritual healing and self-improvement that everyone can use. It has been effective in helping virtually every known illness and malady and always creates a beneficial effect. It also works in conjunction with all other medical or therapeutic techniques to relieve side effects and promote recovery. An amazingly simple technique to learn, the ability to use Reiki is not taught in the usual sense, but is transferred to the student during a Reiki class. This ability is passed on during an "attunement" given by a Reiki master and allows the student to tap into an unlimited supply of "life force energy" to improve one's health and enhance the quality of life. Its use is not dependent on one's intellectual capacity or spiritual development and therefore is available to everyone. It has been successfully taught to thousands of people of all ages and backgrounds. While Reiki is spiritual in nature, it is not a religion. It has no dogma, and there is nothing you must believe in order to learn and use Reiki. In fact, Reiki is not dependent on belief at all and will work whether you believe in it or not. Because Reiki comes from God, many people find that using Reiki puts them more in touch with the experience of their religion rather than having only an intellectual concept of it. While Reiki is not a religion, it is still important to live and act in a way that promotes harmony with others. Dr. Mikao Usui, the founder of the Reiki system of natural healing, recommended that one practice certain simple ethical ideals to promote peace and harmony, which are nearly universal across all cultures. During a meditation several years after developing Reiki, Dr. Usui decided to add the Reiki Ideals to the practice of Reiki. The Ideals came in part from the five principles of the Meiji emperor of Japan whom Dr. Usui admired. The Ideals were developed to add spiritual balance to Usui Reiki. Their purpose is to help people realize that healing the spirit by consciously deciding to improve oneself is a necessary part of the Reiki healing experience. In order for the Reiki healing energies to have lasting results, the client must accept responsibility for her or his healing and take an active part in it. Therefore, the Usui system of Reiki is more than the use of the Reiki energy. It must also include an active commitment to improve oneself in order for it to be a complete system. The ideals are both guidelines for living a gracious life and virtues worthy of practice for their inherent value. The secret art of inviting happiness. The miraculous medicine of all diseases. Just for today, do not anger. Do not worry and be filled with gratitude. Devote yourself to your work. Be kind to people. Every morning and evening, join your hands in prayer. Pray these words to your heart and chant these words with your mouth. Usui Reiki Treatment for the improvement of body and mind. The founder, Usui Mikao Reiki classes are taught all over the country and in many parts of the world. © Copyright 1990-2008 The International Center for Reiki Training. Reprinted with permission from www.reiki.org - 11 - EXTRA! EXTRA! Read all about it! The ABDA is partnering with other organizations to bring you more global news about Behçet’s Disease! It is no secret that Behçet’s is very rare here in the United States, right? So why not work with our friends “across the pond” to keep up with the latest news in the Behçet’s communities over there? The ABDA is trying to reach out to the Behçet’s organizations all over the world to see if we can’t bring even more information to our members. As you can see on page seven of this newsletter, the Behçet’s Syndrome Society (of the United Kingdom) was kind enough to let us reprint their summary of the 13th International Conference this year. Since the ABDA has been unable to afford to send representatives to these conferences (we hope to change this in the future), this was a great way for us to still bring home information for our members. The partnership with the Behçet’s Syndrome Society will allow us to post their quarterly newsletters on our premier member areas of our website - and they will do the same with our newsletter on theirs. It’s remarkable how similar our organizations are and it’s amazing to read the stories from overseas that capture the same courage and determination in their members as we see in our own! Stay tuned to our website for more information on this partnership and look for the Behçet’s Syndrome Society newsletters in the RESOURCE area of our site. And remember - you can send your feedback or stories and ideas for our newsletter to [email protected]. We always love to hear from you! The Fentanyl patch can be fatal to your pets! One member’s terrifying experience - don’t let it happen to you! by Sandy McElgunn This is a warning to all patients using the Fentanyl Pain Patch. A few months ago, we almost lost our little Bichon Frise puppy named Frosty. I had walked him that morning, twice, and needed to take a hot shower to help my aching joints. I took a half hour shower and came out to find Frosty passed out, hardly breathing laying on the ottoman. Not knowing what was wrong, I frantically ran to get my keys to drive Frosty to our neighborhood vet. Something caught my eye laying on the floor besides him. I knew instantly when I saw the pain patch laying on the carpet. The pain patch had bite marks throughout the patch. The patch must have fallen off my skin and he found it and chewed on it. I scooped up his lifeless, limp, seven pound body and I ran to my car. When we reached the vet, I ran in carrying Frosty, screaming “Help my puppy. He has chewed my Fentanyl patch”. The vet technician grabbed Frosty, put him on the scale, and told me to follow him. One of the veterinarians came in and told me to stay calm. He said that there is a drug called Naloxone that will counteract the drugs that Frosty consumed by chewing the patch. The vet said this medication will reverse any damage that the Fentanyl is doing to the puppy. They injected this medication through the small veins in Frosty’s little front leg. Within seconds, Frosty’s eyes cleared, he woke up and started licking my face. Frosty was back to himself and I just started crying. I was crying tears of joy. I could not believe my eyes, as I The Vet explained to me that three things had watched this puppy become full of life and ener- saved Frosty’s life: gy again. The vet told me that not all animal 1. The fact that Frosty did not swallow the patch. hospitals carry this drug. He explained that the If he did swallow it, it would have been hard to larger hospitals usually keep it on hand for emerretrieve and/or we would have never known gencies. Frosty had to spend the rest of the day at what was wrong with him because there would not be any patch to find. Getting the injection in a timely manner really saved Frosty. 2. I am only on 25 ml. patch. Had it been a stronger dose, it probably would have instantly killed a smaller dog. 3. My doctor and I had recently decided instead of increasing the patch to 50 ml. I would change to every two days instead of every three. I had forgotten to change it the day before so it was a three day patch with most of the fentanyl used up. Thank God for Behçet’s memory loss! A month later, Frosty’s blood test was back to normal. His liver levels were normal as well. He had no need for more medication. This little sweet creature brings me so much joy on days that I’m feeling so bad, that I had to share our scare with everyone. Please be sure to tape the edges of your patch with surgical tape to ensure that it will not fall off. I have used the pain patch for over five years and never had one fall off like this time. Also, I never throw them away in the trash can. Always flush them away as directed. the animal hospital. He received several treatments of charcoal to absorb the rest of the Fentanyl in his stomach. Frosty had to have IV infusions of fluid. Also they gave him another shot of Naloxone. Frosty was released later that evening. Blood was taken to make sure all of his levels were ok. Tests showed his liver enzymes were high. Frosty was sent home with a medication to help his liver return back to normal activity. Better to be safe than sorry!! FDA Guidelines for Drug Disposal Is your medicine cabinet filled with expired drugs or medications you no longer use? How should you dispose of them? Most drugs can be thrown in the household trash, but consumers should take certain precautions before tossing them out, according to the Food and Drug Administration (FDA). A few drugs should be flushed down the toilet. And a growing number of community-based "take-back" programs offer another safe disposal alternative. Guidelines for Drug Disposal FDA worked with the White House Office of National Drug Control Policy (ONDCP) to develop the first consumer guidance for proper disposal of prescription drugs. Issued by ONDCP in February 2007, the federal guide- trash and recycling service (see blue pages in phone book) to see if a take-back program is Follow any specific disposal instructions on the available in your community. drug label or patient information that accompanies the medication. Do not flush prescription FDA's Director of Pharmacy Affairs, Ilisa drugs down the toilet unless this information Bernstein, Pharm.D., J.D., offers some additional tips: specifically instructs you to do so. lines are summarized here: If no instructions are given, throw the drugs in the household trash, but first: Take them out of their original containers and mix them with an undesirable substance, such as used coffee grounds or kitty litter. The medication will be less appealing to children and pets, and unrecognizable to people who may intentionally go through your trash. Put them in a sealable bag, empty can, or other container to prevent the medication from leaking or breaking out of a garbage bag. Take advantage of community drug take-back programs that allow the public to bring unused drugs to a central location for proper disposal. Call your city or county government's household - 12 - • Before throwing out a medicine container, scratch out all identifying information on the prescription label to make it unreadable. This will help protect your identity and the privacy of your personal health information. • Do not give medications to friends. Doctors prescribe drugs based on a person's specific symptoms and medical history. A drug that works for you could be dangerous for someone else. • When in doubt about proper disposal, talk to your pharmacist. • Bernstein says the same disposal methods for prescription drugs could apply to over-thecounter drugs as well. residues enter water systems is by people taking medications and then naturally passing them through their bodies, says Raanan Bloom, Ph.D., an Environmental Assessment Expert in FDA's Center for Drug Evaluation and Research. "Most drugs are not completely absorbed or metabolized by the body, and enter the environment after passing through waste water treatment plants." Why the Precautions? Disposal instructions on the label are part of FDA's "risk mitigation" strategy, says Capt. Jim Hunter, R.Ph., M.P.H., Senior Program Manager on FDA's Controlled Substance Staff. When a drug contains instructions to flush it down the toilet, he says, it's because FDA, working with the manufacturer, has determined this method to be the most appropriate route of A company that wants FDA to approve its drug disposal that presents the least risk to safety. must submit an application package to the About a dozen drugs, such as powerful narcotic agency. FDA requires, as part of the application pain relievers and other controlled substances, package, an assessment of how the drug's use carry instructions for flushing to reduce the would affect the environment. Some drug applidanger of unintentional use or overdose and cations are excluded from the assessment illegal abuse. requirement, says Bloom, based on previous agency actions. For example, the fentanyl patch, an adhesive patch that delivers a potent pain medicine "For those drugs for which environmental through the skin, comes with instructions to assessments have been required, there has been flush used or leftover patches. Too much fentanyl no indication of environmental effects due to can cause severe breathing problems and lead to flushing," says Bloom. In addition, according to death in babies, children, pets, and even adults, the Environmental Protection Agency, scientists especially those who have not been prescribed to date have found no evidence of adverse the drug. "Even after a patch is used, a lot of the human health effects from pharmaceutical drug remains in the patch," says Hunter, "so you residues in the environment. wouldn't want to throw something in the trash that contains a powerful and potentially danger- Nonetheless, FDA does not want to add drug residues into water systems unnecessarily, says ous narcotic that could harm others." Hunter. The agency is in the process of reviewing all drug labels with disposal directions to Environmental Concerns assure that the recommended methods for disDespite the safety reasons for flushing drugs, posal are still appropriate. some people are questioning the practice because of concerns about trace levels of drug Another environmental concern lies with residues found in surface water, such as rivers inhalers used by people who have asthma or and lakes, and in some community drinking other breathing problems, such as chronic water supplies. However, the main way drug obstructive pulmonary disease. Traditionally, many inhalers have contained chlorofluorocarbons (CFC's), a propellant that damages the protective ozone layer. The CFC inhalers are being phased out and replaced with more environmentally friendly inhalers. Depending on the type of product and where you live, inhalers and aerosol products may be thrown into household trash or recyclables, or may be considered hazardous waste and require special handling. Read the handling instructions on the label, as some inhalers should not be punctured or thrown into a fire or incinerator. To ensure safe disposal, contact your local trash and recycling facility. This article appears on FDA's Consumer Health Information Web page (www.fda.gov/consumer), which features the latest on all FDAregulated products. Sign up for free e-mail subscriptions at www.fda.gov/consumer/consumerenews.html. For More Information Proper Disposal of Prescription Drugs Fact Sheet and Video Clip www.ondcp.gov/drugfact/factsht/proper_disposal.html SMARxT Disposal Campaign www.smarxtdisposal.net Albuterol Inhalers: Time to Transition www.fda.gov/consumer/updates/albuterol0530 08.html Behçet’s Disease Books and Resources Payment by VISA/MasterCard accepted; also accepting checks or money orders from U.S. banks only (payable to Central Vision Press) Payment by VISA / MC / Check / M.O. enclosed Essential Guide to Behçet’s Disease Special ABDA member rate is available for this book through DECEMBER 31, 2008 Credit Card # ____________________________________________________ Exp Date ___________ Signature ____________________________________________ $25 including shipping, for U.S.addresses only. (Outside the U.S., total price is $30). Name : ___________________________________________________________________________ Also available through the online store at www.bdbooks.info: You Are Not Alone: 15 People with Behçet’s Address: _________________________________________________________________________ $18 additional if added to above order. - 13 - GIFT/DONATION FORM Your gifts and donations help the work of the ABDA in locating patients with Behçet’s Disease, providing information and support to patients and their families, and educating medical professionals. The American Behçet’s Disease Association is a 501(c)3 non-profit organization registered in the State of Minnesota. We provide many services to persons with Behçet’s Disease, their families and the medical community serving them. The ABDA is only one organization and there are no local chapters. The ABDA executive board, with a few exceptions, is made up of others like yourself who have Behçet’s Disease. They all volunteer their time and are not compensated in any way. We do not receive any governmental funding or funding from any other source except contributions through membership, private donations and ABDA fundraising events. We rely on your contributions to fund all activities. Would you please consider a donation with a check, credit card, stock assets, or whatever you feel would be helpful? Thank you and we appreciate your support. GIFTS DONATIONS Gifts are a wonderful way to let someone know you care. An ideal gift for companies and vendors also because with each gift, the listed person will get an acknowledgement of your generosity. We are a non-profit organization and rely on donations to fund such events as the National Conference. Your donations also go toward bringing information to Behçet’s patients, healthcare professionals, caregivers and family. Enclosed is my gift of $__________ Enclosed is my donation of $__________ ■ In Memory ■ In Honor Receipt Information: of _______________________________________ Acknowledge this gift to: Name: __________________________________ Name: __________________________________ Address: __________________________________ Address: __________________________________ City: __________________________________ City: __________________________________ State / Zip : __________________________________ State / Zip : __________________________________ Telephone: __________________________________ (Gifts are listed in our newsletter unless otherwise noted) E-mail: __________________________________ (Donations are listed in our newsletter unless otherwise noted) ■ Do not list in newsletter ■ Do not list in newsletter ADDITIONAL INFORMATION PAYMENT TYPE ■ Please send me information on planned giving, ■ estate planning and stock donations. Please send me information about how my company can match my donation to the ABDA. ■ Enclosed is my check for: ____________________ ■ VISA ■ MasterCard Number: Please fill out this form and mail with your gift or donation (payable to The American Behçet’s Disease Association) to: ___________________________________ Exp. Date: ___________________________________ The ABDA • PO Box 869 • Smithtown, NY 11787-0869 OR FAX TO: 1-480-247-5377 Signature: ___________________________________ - GIFT DONATION FORM - Give a very special Holiday gift! Would you like to do something special for your loved one’s birthday, anniversary or Holiday occasion? How about something that is unique and will really make a difference? Consider making a donation to the ABDA in your loved one’s name. By doing so, you will help support the ABDA and its mission as well as educate others about Behçet’s Disease. For each donation, we will send a personal note to the recipient telling them that your generous donation was made on their behalf. In addition, we will also print an acknowledgement in our newsletter. You can give a donation in several ways: Fill out the form above and the information to the right and fax it with Credit Card info, mail with your enclosed check or donate online at www.behcets.com. We are able to accept Visa/MasterCard. You can also contact the Secretary, Denise Corrado at [email protected] with any questions. Thank you for considering the ABDA for your gift-giving needs. For gifts other than In Memory or In Honor of, please list the details here so we can send an appropriate acknowledgement. Occasion: ______________________________________________ Who To: ________________________ Date of Birth: ___________ Special Note: ___________________________________________ ______________________________________________________ From: _________________________________________________ Your Telephone (in case we have questions) ___________________ - 14 - News from the ABDA... Behçet’s Disease to Hit Public Television! Part of the ABDA’s mission is to raise awareness about Behçet’s Disease. With awareness, comes diagnosis. With more diagnosis, comes more help in the forms of research, grants, etc. mercial. This will air on Cable Television on several network channels. (We will post a schedule on our website when we receive it). The ABDA’s Board of Directors has decided to invest in an opportunity that we were presented with this past quarter. The National Medical Report (hosted by Hugh Downs) contacted the ABDA as one of thirty potential organizations that they were interested in doing a piece on. • A 6-8 minute Corporate Documentary that we will have a link to on our website to help educate and raise awareness. This will also be placed on Google Video and You-Tube for public viewing. While there is a large investment to be made into the production costs, we believe that the benefits that the public awareness will bring will be well worth it. After two phone interviews with our Executive Director, the ABDA was chosen as the group they wanted to highlight for this piece. We plan to make the 6-8 minute educational video available to the public on DVD for a small fee (to cover the duplication and shipping costs). The production will consist of several pieces that the ABDA will own upon the completion of the project. • A 3-5 minute piece that is educational about Behçet’s Disease and is aimed at raising awareness about the disease as well as our organization. The video will be shot during the weekend of this year’s Walk for Behçet’s Disease in New York, and we hope to have the editing wrapped up and on air by year-end. This piece will be aired between programs on public television channels all over the world for one year. This is the first investment of its kind for the ABDA and we are hopeful that this will raise the type of awareness that Behçet’s Disease desperately needs. Using this awareness, we will work harder than ever to raise funds to begin research in America. It will also be formatted for our website and distributed to You-Tube and Google Video with appropriate key words. Please stay tuned to our website and future newsletters regarding this exciting project! • A one-minute PSA (Public Service Announcement) to be aired like a com- VOLUNTEERS NEEDED Medical Liaisons Do you work in the Volunteers must have: Medical Profession, or • Professional Healthcare industry background know someone who does • Excellent computer, internet and communicawho may want to help us fight Behçet’s Disease? tion skills (phone conversations, e-mail) • Be responsible & highly organized We are looking for a few people who may have • Be passionate about helping fight Behçet’s! an hour or two a week to help us with some medical-related projects within the ABDA. You don’t Please contact [email protected] to find out have to be a doctor or nurse, but experience in more about these highly rewarding positions! the medical industry would be very helpful! NEW MEMBERS: ABDA Premier Members (May, 2008 - August, 2008) CARMEN AROCHO-BLANCO STEPHEN BARONE CAROLINE BHAGAT BARBARA BRECHER MARNIE CALAMARI CAROLANN CATANIA TONYA CATER JLLL COLE CAROL COLLINS WILLIAM CORDELL CYNTHIA DESMOND KAREN EARL BARBARA FESSLER SHELLEY GILFOIL GINNY GILL PHYLLIS GREER KAREN HART MARILYN LEE HESS YOON JINNY SHELLI KNIEVEL DELANEY LA ROSA KRISTY LABUDA ASHLEY LEFFERS LESA LEPAGE PENNY MOIR CATHERINE MRAKOVCICH BECKY OTTEMAN DAVID PETERSEN ROSE PETTIBON JANE PLAUT ROBERT REMMENGA DEAN RHODY LIBBY ROBERTS MARCIE RUCKER NANCY RUHL BRANDY RYMAN DIANA SCHENDEL ROSANNE STATE BERNADETTE STRETZ MARILYN WEESIT COLLEEN WENDLAND CHELSEA YOUNG CONTRIBUTORS: Donations made (May, 2008 - August, 2008) VALERIE ADELMAN MARK & CAROLE HICKMAN LARRY BANKS HEATHER JOHNSON MICHAEL BURKE PATRICIA LAFFEY VICTOR CALAMAN JR. MARLENE MERRIFIELD ENRIQUE CROOKS CELE MOYSE JARED & HOPE DANIELS NET PROFIT GROUP WEISS MARGERY SALZMAN KIMBERLEE DORST ANNETTE SHEPHERD LINDA FISHER MARTHA WHARTON BART & GLORIA LOTTIE WILCOX FLAHERTY ANDREE WILLIAMS TERRY GOLDBERG IN HONOR OF: Donations made (May, 2008 - August, 2008) GILLIAN CHOUINARD MARISOL CULSHAW MARY BURKE MRS. PAT KOVALCHICK SAMANTHA CIMINI TABETHA RITCH & EVERYONE AFFECTED BY BEHÇET’S DISEASE IN MEMORY OF: Donations made (May, 2008 - July, 2008) KIMBERLY KING WENDY SMITHHART Important Dates... What When Where How Current Treatments for Behçet's Disease - NY October 17 Uniondale, NY www.behcets.com/walk 2008 Walk for Behçet’s Disease - NY October 18 East Meadow, NY www.behcets.com/walk We would like to extend our sincerest gratitude to the printing and mailing companies that generously donate the services we use to bring you this newsletter! ACR/ARHP Annual Scientific Meeting October 24 - 29 San Francisco, CA www.rheumatology.org Thank you! American Society of Human Genetics (Annual) Nov 11-15 Philadelphia, PA www.ashg.org - 15 - American Behçet’s Disease Association PO Box 869 Smithtown, NY 11787-0869 • • • • • FIRST CLASS POSTAGE PA I D Rockville Centre, NY 11570 Permit No. 186 The 13th International Conference on Behçet’s Disease Dispose of Those Drugs - PROPERLY! One Member’s Terrifying Experience How to Communicate with a Chronically Ill Person Sanya Richards, OLYMPIC GOLD MEDALIST, walking with the ABDA in New York! Behçet’s Disease Hits Public Television! Reaching out to all of those affected by Behçet’s Disease... Beijing Gold Medal Sprinter Slows to a Walk to Help Fight Her Rare Disease Sanya Richards stunned millions of viewers as she overcame what looked like an insurmountable deficit to surpass the Russians and win the Gold Medal for the US Women’s 400x4 Relay team in Beijing. It was truly a heartpounding event for anyone lucky enough to be watching. What may be more amazing about this 23-year old US Team Anchor, a seemingly perfect picture of strength, health and beauty, is that just one year ago Sanya was facing the almost unbelievable diagnosis of a rare and sometimes debilitating illness called Behçet’s Disease. Behçet’s Disease (or Behçet’s Syndrome) is an autoimmune disorder that causes vasculitis (inflammation of blood vessels) in the organs of the body. While Behçet’s can affect every organ of the body, it often presents with mouth and skin ulcers and sometimes extreme fatigue in the beginning stages – as it did with Sanya. Working through her rigorous training with a cup in her mouth to prevent ulcers from sticking together, and wrapping the lesions on her legs to keep the sun off of them, Sanya was not going to let this strange illness keep her down for long. While Sanya was fortunate enough to be diagnosed early and began treatment to control her disease immediately, many are not this lucky. Behçet’s can affect each individual differently. It is so rare (under 20,000 diagnosed cases in the United States), that it is very common for sufferers to be misdiagnosed or not diagnosed for several years as their symptoms progress into a debilitating state. Men, women and even children can be affected and are left feeling scared, confused and alone as they try to cope with a myriad of symptoms affecting them. Behçet’s may ultimately cause blindness, arthritis and complications of the pulmonary, intestinal and circulatory systems in a large number of patients, especially if not treated. Any of this would be devastating to an Olympic runner’s dreams of gold, but not for Sanya. Exemplifying both her incredible determination to battle through this potentially devastating illness and her will to do even more to help others, Sanya is taking her Olympic medals for a walk in East Meadow, New York this October. As an honorary Board Member and Spokesperson for the American Behçet’s Disease Association (www.behcets.com), Sanya is filming several Public Service Announcements as well as attending the 2008 Walk for Behçet’s Disease this October to help raise awareness about her rare illness. The Walk for Behçet’s Disease will be held on October 18th, 2008 at Eisenhower Park on Long Island (East Meadow, New York). Sanya’s doctor, Yusuf Yazici of the Behçet’s Syndrome Center at NYU Hospital for Joint Diseases in New York City, will be giving a talk about the current treatments of Behçet’s Disease the evening before the walk. The proceeds of this fundraising event will go toward educating the medical field and raising awareness about this rare disease so that more people can be diagnosed at an earlier stage like Sanya. For more information about Behçet’s Disease, the 2008 Walk for Behçet’s Disease, or to donate, visit www.behcets.com.