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By Phil Smith My goal when I went onto the U of M campus was to test By Mike Peters people’s basic knowledge of hemophilia and von willebrands. In 30 minutes, I got to talk to three students. I went out on the street of U The first person I talked to was Georgina Mae, a of M and asked people some second year student studying engineering. She had heard of questions on von Willebrand and hemophilia, but not VWD. I hemophilia and what asked her what was wrong surprised me was that with hemophiliacs, and she some of the people I replied that it was a lack of asked the questions to platelets, as opposed to what it Two MYLIFErs decided to go out on got some of them right. really is, a factor deficiency. The first question I asked was the campus of the University of Next was Brad Beckerson, a what does V.W.D means. One guy replied Michigan to find out what the general freshman at U of M studying political “Volkswagon Debut” and that was wrong, population knows about bleeding science and French. Again he knew what but it was alright. The second question I diesorders. It was a cold day, but hemophilia was but not V.W.D. He told asked was to a lady. The question was, both guys got people to stop and me hemophiliacs bleed easier because of “Is hemophilia a dance?” and she said “It answer their questions. Here’s what their genetics, which was half right. Brad is not a dance, it is a bleeding disorder,” they found out! knew that hemophilia wasn’t contagious, and she was correct. The next question I but he believed hemophiliacs bleed easier, when they don’t necessarily asked was, “Is V.W.D a restaurant?” and the lady and bleed easier, just longer, and it is more serious when they do. gentlemen said, “No it was not a restaurant,” and they were Last was Paul Brown, a freshman studying dentistry. He knew correct as well. The fourth question was “If someone said what hemophilia was, still no V.W.D. though. Paul knew that hemos bleed you were a hemo what does that mean?” The lady replied, longer, as opposed to easier, and that it is because of their genetic “It means that you’re not heterosexual.” She was WAY off, inabilities that they take longer to form a clot. All this he knew easily but but I had to laugh it off. The final question I asked my last he still thought that it was due to a lack of platelets. person was “How do you spell hemophilia?” and the Overall, the average person knows some of the basic stuff about gentlemen and lady got it correct. I have to give it to the hemophilia. Von Willebrands however, needs to get a better name, I people that I questioned on hemophilia and von Willebrand suppose. Not a single person I talked to had even heard of it, much less they a little about the bleeding disorder, but not a lot. been aware of the conditions of the disease. Street Smarts Hemophilia Foundation of Michigan 1921 W. Michigan Ave. Ypsilanti, MI 48197 www.hfmich.org The Bloody Truth An HFM Publication for Teens by Teens Spring 2005 Non-Profit Org. U.S. Postage PAID Ypsilanti, MI Permit No. 970 MYLIFE 2005: (Back L-R)Kevin Seyfried, Mike Peters, Nick Gamber, Jim Munn, RN (Front L-R)Adam Wilmers, Caroline North, Michelle Finnerty, Phil Smith, Angela Lattas MYLIFE Back in Action for Great Teen Programs! On April 1,2 and 3rd, HFM’s MYLIFE (Michigan Youth: Leadership Initiative for Education) met at the Emrich Retreat and Conference Center in Brighton. During the weekend they put together this newsletter full of articles they thought you would find interesting, plus some games and puzzles and even a contest. Cut out the coupon below, answer the questions after reading this installment of the Bloody Truth, and mail it back to HFM before June 1st to be entered in a drawing for gift certificates for food, movies, clothes or books! 1. What is the third myth in “Myths About Hemophilia? ___________________________________ 2. State three symtoms of a drug overdose. 1._____________________ 2._____________________ 3._____________________ 3. What did the man say when Mike Peters asked him “What does VWD mean?” ___________________________________ Return this coupon to HFM, 1921 W. Michigan Ave., Ypsilanti, MI 48197 by June 1 to be entered in the drawing! Myths Ahout Hemophilia By Kevin Seyfried There are many myths about hemophilia. The third myth is that women cannot have hemophilia. It is extremely rare Some may be obvious, others not so. That’s why I am here to clean things up. but women can get hemophilia. If her mother is a carrier and her father has The first myth is that people with hemo- hemophilia she would inherit the gene for it. philia do not play sports. Hemophiliacs can play any sports they would like to play. Some like The last myth I would like to clear up is there is no cure for hemophilia. So far football, rugby and hockey are not highly scientists searching for a cure believe, recommended because theoretically, that gene therapy could cure hemophilia. Your genes help of the high physical develop hemophilia, so they could contact. Others like soccer, basketball, swimming, volleyball stimulate your genes to cure your and track are great ways for hemophiliacs specific disease. to exercise and have fun. As long as you know your limits you can play what you There are many more myths to be researched. Most of you could figure want without any worries. out pretty quickly if they are fact or fiction. You will hear The second myth is that asprin will many myths throughout your not effect your clotting time. life; believe them if you want, Asprin is made to thin the blood but the best and most honest and it reduces the ability for blood answers come from research to clot. Hemophiliacs should of your own. Don’t be afraid never take asprin to relieve pain or headaches. It could cause a bleed to to speak out against the crowd. accur in over worked or target joints. Talk to your HTC before taking any pain relievers. ***************************************************************************************************************************************************** C N F G C X H V F K E L S I N V S A L A A J D B R L T P U I Z O Q A I R I U D J G O R D S O H N Q N A S J U X A S I F H E F G W D L Z E H R E R N C R G T U N I O Y T T Z D U G F N N A A O H L C A I S L L F Q K I B B E A I L I H P O M E H R R S U J R I O E T V B P S O O Y L F R E T T U B A P L T V T S N N Y O N E Y U R M C O U C D B Y B T D G R X C A O V O O U Z R I Y N Z W O F C N L D D U S P K C S W Y U Z F S D O U Y L S I L Y O F V N O E G V J BANDAID BLOOD BUTTERFLY CAMPBOLDEAGLE CIT CLOT DOCTOR FACTOR HEMOPHILIA HTC NURSE OUTPOST RETREAT SPRINGFEST SYRINGE VONWILLEBRAND Some Basic Things To Know About Sex By Angela Lattas Being a teen, sex is something I hear and see daily. With television, school, and all the different types of music out there today, sex is definitely a hot subject. I personally believe kids should know the options and the risk they could take. Many kids today think it makes you “cool” to be doing it, when really it makes you a fool unless you know the facts. You can get pregnant the first time you have sex, or get an STD (Sexually Transmitted Disease) without even knowing it. Here are some options to protect yourself. Girls can take “the pill” to prevent pregnancy, but that does not protect you from STD’s Condoms can be used to prevent pregnancy and STD’s, or you can make the best decision and stay abstinent. All of those options can help you, but you should play it smart and stay abstinent. Now as I said, there are STD’s you can get. Some you may have heard of, like HIV/AIDS or hepatitis, but there are so many more. Some you can’t even tell you have or others that will never go away. Any STD can change your life, some will effect you forever and make you very ill, and just remember you can get one your first time if the other person has been sexually active before. So be smart, don’t be shy. Ask questions and get some answers before it’s too late. Don’t ruin your life by doing something that can wait. Don’t risk it unless you are being safe, and even then remember there is always a chance some thing can happen even with the pill and a condom. Be smart; don’t do something you’ll regret just to be cool. Due to the great pain that hemophiliacs suffer many of them turn to pain killers to help reduce their suffering. However, this leads to a large problem among many hemophiliacs who then become dependant on pain killers. It is very easy for many hemophiliacs to justify their addiction because of the pain they suffer. However, it is very important for teenagers to recognize the symptoms and be aware that drug addiction can happen to anyone. Most hemophiliacs will use painkillers when they have serious or debilitating pain. When used properly and managed correctly, painkillers can be a real asset to many hemophiliacs with chronic pain. However, when a person begins to lose control of themselves to obtain the drug and when they focus primarily on using and obtaining the drug, this is when a person has become addicted. Many prescription painkillers activate very important parts of the brain, like parts that tell your body what it likes and doesn’t, and that is why they are so addictive. All addicts will face physical dependency as well. Physical dependency is when the body suffers withdrawal symptoms after a long period without the drug use. Some withdrawal symptoms for painkillers would include: watery eyes, runny nose, yawning, loss of appetite, tremors, panic, chills, sweating, nausea, muscle cramps and trouble sleeping. There is an increase in blood pressure, pulse rate, quicker breathing, and high temperature as withdrawal progresses. A leading cause of addiction amongst hemophiliacs is the need for a higher dosage after every use. This becomes a serious problem for hemophiliacs who after using painkillers several times can no longer get the pain relief the once had causing them to use more of the drug. This need for more and more of the drug can sometimes lead someone to overdose. An overdose is when the body cannot handle the amount of drug that a person has put into their body. Symptoms of an overdose could include: vomiting, accelerated heart rate, and coma. Hemophiliacs suffer a great deal of pain in their lives and it is no wonder that they subsequently turn to painkillers to relieve their pain. While these painkillers can be very beneficial to people and allow them to live seminormal lives, they still do have inherent risks. As teenagers we must understand these risks and weigh the benefits of the painkillers against the risks. Addiction can happen to anyone and understanding this is a great step forward in preventing addiction. Drug Addiction Among Hemophiliacs By Nick Gamber ***************************************************************************************************************************************************** Fighting To Find A Cure By Michelle Finnerty and Caroline North Experts say that Hemophilia could be cured in the future as long as they keep working with gene therapy to figure out a way to replace or repair the defective gene. As of now they are thinking that if they could transfer a corrected gene to a patient in time the patient’s body would be able to produce the missing factor on its own. Pleuripotent stem cells would be perfect for the transfer of the human genes to make this change. Just recently gene therapy for hemophilia has taken the next step, in which they are now taking human trials. There are ways that people with hemophilia can volunteer in clinical trials. This would help with studies and would also benefit the volunteer because they can try new treatments before they are available to the public. Another new study is that they are now working to evaluate genetic and immunological bases for inhibitor development. They are now working on finding replacement factors so that the inhibitor won’t develop.