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Volume 2 Issue 3 April 2002 ECTODERMAL DYSPLASIA SOCIETY Contact: Mrs. Diana Perry, 108 Charlton Lane, Cheltenham, Glos. GL53 9EA England. Tel: 01242 261332 Registered Charity No. 1089135 http://www.ectodermaldysplasia.org Email: [email protected] GENETICS GUIDE Cells, Proteins and Genes Every part of your body is made up of millions of cells. We all began as a single cell, the fertilised egg, that divided into two daughter cells which in turn divided to give four cells and so on. Through this amazing process of embryological development supported by the nurturing environment of our mother's womb, most of us ended up the right shape with all our organs in place and functioning as they should. The cells of the different tissues of the body have their own special job to do, their structure and behaviour being appropriate to that particular function. But what accounts for the different properties of specialised cells? Basically these differences stem from the varied combination of proteins which make up each cell and are needed to carry out the cell's work. Cells are the basic building blocks of the body and proteins, the basic building blocks of the cell. The action of the genes determines which proteins are produced in what cells. Genes provide the instructions for the manufacture of proteins by the cell. With very few exceptions, ‘EDlines’ in this Issue: Genetics Guide News & Views John’s Story From the Trustees Parental Leave Update And Finally … p1 p4 p5 p8 p9 p9 each cell has a full set of genes packaged into 46 tiny structures called chromosomes (Fig. 1). Not all the genes are active in any one cell, just those appropriate to that cell type and the functions it must perform. Our genes not only guide our development from fertilised egg to fully grown adult, but go on providing the information that is needed for everyday maintenance and functioning of our bodies. For this reason an inherited genetic fault can cause errors of development that are manifest at birth or soon after, or cause a specific malfunction of the body. Inheritance It takes two to make a baby, so chromosomes, the genes they carry, come in pairs; one set of 23 from mother and one from father, making 46 in total (Fig.2). It is the chromosomes in the egg and sperm that carry the genetic information from one generation to the next. In the formation of sperm, one of each chromosome pair is placed into the developing sperm, and likewise for the egg, so each has a single set of 23 chromosomes. When the egg and sperm come together at fertilisation, the proper number of 46 is restored, ready for the baby's development. Sometimes the process that leads to just one of the chromosome pair being placed in the egg or sperm goes wrong and the resulting child has 47 or 45 chromosomes. The commonest chromosomal abnormality of this type is Down's syndrome, usually due to the egg having both copies of chromosome 21 so the affected child ends up with three. This overdose of gene action from chromosome 21 disturbs the genetic control of development. Twenty-two of the chromosomes pairs are the same in males and females, but the 23rd pair is different. The chromosome pairs that are the same in both sexes, numbered 1 to 22, are called autosomes to distinguish them from the sex chromosome pair, X and Y. Females have two X-chromosomes, whilst males have one X 2 and one Y chromosome. This means that sperm are of two types with respect to their chromosomes; half will have an X chromosome and half a Y chromosome. If an X-carrying sperm fertilises the egg, the baby will be a girl, whilst a Y-carrying sperm makes a boy. The father determines the sex of the baby. Understanding how the chromosomes behave during egg and sperm formation has allowed us to explain the simplest patterns of inheritance of a character, or disease, as originally observed by Gregor Mendel in his study of peas over a century ago. There are three simple patterns of inheritance. The first two involve one of the pairs of genes on chromosomes 1 to 22 and are referred to as autosomal dominant and autosomal recessive inheritance. The third, sex-linked inheritance, involves one of the genes on the Xchromosome and for this reason is more correctly called X-linked inheritance. These three 'Mendelian' patterns of inheritance are illustrated in Fig-3 by way of simple chromosome diagrams depicting a single chromosome pair and just one gene upon it. The top diagram shows that in autosomal dominant inheritance, as occurs in Huntington's Disease or Neurofibromatosis, there is inheritance from one parent. An affected individual has a 50-50 chance of passing it on at each conception. Autosomal recessive inheritance, depicted in the middle diagram, occurs in Cystic Fibrosis or Thalassaemia, and is inheritance from both parents. Only if both pass on a faulty gene can the child be affected. Most often both parents are healthy carriers, and therefore unlikely to be aware that they face a 1 in 4, or 25%, chance of an affected child with each pregnancy. It is important to appreciate that chance has no memory; it is 50% (autosomal dominant) or 25% (autosomal recessive) with each and every pregnancy, regardless of what happened with earlier pregnancies. Recognition that many genes, important for a variety of tissue functions, are carried on the X chromosome, whilst the Y chromosome only carries the gene for maleness and a few others, has allowed us to explain X-linked inheritance, as depicted in the bottom diagram which occurs in Duchenne Muscular Dystrophy or Haemophilia. In this type of inheritance only carrier female has a 50% chance of being affected and a girl has a 50% chance of being a carrier, like her mother. All sons of an affected male will be unaffected (they get dad's Y chromosome), but all his daughters will be carriers (they get dad's X-chromosome). Statistical probabilities are all very well when being reassured by comfortingly low odds (often the case after genetic counselling), but it is not much help to those facing a high chance of an affected child. People often want to know whether they are a carrier or not; whether the developing baby is affected or not. All else is just agonising uncertainty. It has only been through the advances of molecular genetics that most carrier testing and early prenatal diagnosis have become possible. Looking Ahead Advances in human genetics are expected to benefit us in many ways. Most direct, is the help that can be offered to individuals and families threatened by serious inherited disease. Improved understanding of the molecular pathology will, in the long term, lead to better treatments including gene therapy. More indirect, but of great potential benefit, is our ability to understand how genetic variation interacts with environmental factors to cause common diseases, and thereby refine therapeutic interventions. The special nature of genetic information highlights certain ethical issues. This is an additional reason why scientists and clinicians should explain what they are doing and ensure they carry the public with them as they translate research findings into new diagnostic tests and treatments. Another reason for an educational drive to explain genetics is central to an understanding of biology, and given enough insight most people find genetics fascinating and it is a privilege to be living at such an exciting time in the development of human genetics. boys are affected but the disease can be passed on by unsuspecting female carriers. They are usually unaffected (or just mildly so) because, unlike the affected male, she has a second X chromosome which carries a working copy of the gene that can compensate for the malfunction of the faulty gene. A boy born to a Thanks to the Progress Educational Trust for permission to reproduce this extract from The Progress Guide to Genetics (October 1996) www.progress.org.uk ◘ 3 Can you help? Two of our members have recently requested information on ‘skin blistering’. They mention little white blistering spots, mainly on the face, which appear to be filled with watery fluid. Has anyone else experienced similar problems? ◘ Will this help? We have had a report from a younger member about a sun cream that she has come across which she says really works for her. The ‘ROC total sun-block’ is prescribed by her doctor and has enabled her to enjoy holidays in Salou and Teneriffe. Have any other members had joy with this sun-block? ◘ The use of a product name does not constitute a recommendation or endorsement by The Society. Thanks for your help We are very grateful to Wendy who so faithfully stuffs, labels and sticks postage stamps on envelopes for our Newsletter mailings. Thanks, Wendy. ◘ Suck & Swallow advice Diana Perry Who says you can’t teach your granny to suck eggs! You can, and she can …… When Jack came home desperately trying to keep his upper dentures in place I turned to my Mum and asked her “how do you keep your teeth in?” This is something Mum never thinks about as they ‘just stay in’, but when given the challenge (my Mum likes a challenge) she went away to work out ‘how do I keep my dentures in?’ 4 After much deliberation she came back, sat Jack down and said “put your teeth in your mouth (the right way up silly!), hold them up with your tongue, put one thumb on one side of the dentures and the other thumb on the other side, push up, suck and then swallow” bingo – they stayed in. Apparently it is the ‘swallow’ action that fixes them in place. Thank you so much for sharing this with us Mum, especially as I know you don’t like people to know you have dentures, but heigh ho, there’s only 250 members in ED that now know! ◘ Carers Week, 10-16 June 2002 There are 12 key initiatives taking place during Carers week this year. These include free holidays for 1,000 carers and the publication of Carers Week leaflets, enabling carers to send personal messages to Local Authorities explaining why services are so crucial to their quality of life. For more information or for a carers week pack contact Paul Matz, Carers Week Manager on 020 7566 7619 or e-mail: [email protected] ◘ Jeans for Genes The next Jeans for Genes day is 4 October 2002. Funding for the recently announced successful gene therapy for Severe Combined Immune Deficiency (X-SCID) was provided by Jeans for Genes. It is hoped that successful gene therapy for X-linked Chronic Granulomatous Disorder (CGD) will follow. The Jeans for Genes original charities are the Great Ormond Street Charity, the Society for Mucopolysaccharide Diseases, the Chronic Granulomatous Disorder Research Trust and the Primary Immunodeficiency Association. The 2002 Jean for Genes Campaign will also benefit four other charities: The Haemophilia Society, The Jennifer Trust for Spinal Muscular Atrophy, the AT Society and Alstrom Syndrome UK. For more information visit the Jeans for Genes website at www.jeansforgenes.org.uk ◘ John’s Story The following article is based on a conversation that Dr. Angus Clarke had with John Cuningham as part of a Wellcome Trust-funded research project into life with Ectodermal Dysplasia. John Cuningham, now 75, tells about his life. I was born on 26th January 1927. I’ve always had thin hair, never had any eyebrows or eyelashes, and no bodily hair at all on my legs, and only a few bits under my arms, and I knew I didn’t have proper teeth. They never came through. I just had 2 fangs at the front – dreadful – and two at each side at the back. Six in all at the top, and none at the bottom. I went to a little Prep School, a Kindergarten School, and they sent me to a gym where they tried to make me climb ropes and all the parallel bars and jump over horses, and I couldn’t do it. I used to fall down and they all thought I was fooling around. I left that school. I then started getting terrible eczema all around my face, huge great scabs, and it went on for years. My parents took me to see specialist after specialist (there was no National Health Service in those days) who gave me various ointments and creams. When I was about 8, they fitted me with a plate of false teeth, and I went to a Junior School, which was about two miles away from where we lived. I used to go on the tram. I was teased, and called ‘baldy’, all the usual things children do. They tried to make me do sports and other things, but I couldn’t, I used to fall down, just pass out. In the summer, the heat used to affect me terribly, and I just used to flake out. Then one year when I was 8 or 9, I was coming home from school and went to get on a bus but fell off into the street. The conductor thought I was fooling around. After this had happened two or three days running, a Doctor came round who said I had ‘polyneuritis’ and they encased me, as I am today, in splints. My hands were put in big wooden splints and bandaged over a grip. I lay there for about seven months, and I was in a wheelchair. At the time they thought it might be polio and there was talk of me going into an iron lung. As I got better, I continued to suffer with the heat. I used to be taken out to places and when I couldn’t make it, I used to drag myself along the street and flake out under a tree in someone’s garden. No-one took much notice of this, they just said “pull yourself together” or something similar. As I got better I went to Senior School, which was four miles away, until I was 15. I used to walk downhill to school in the morning, but coming home, particularly in the summer, was a nightmare. I can remember crawling along roads to get back to the bus, and I kept telling people that I couldn’t cope with the heat. One year we went to Eastbourne for a holiday. We had to get a train to London first, and then change trains for Eastbourne. It was one of the hottest days of the year, in the middle of the war, and there were no seats at all. I had to stand up in the corridor, until I suddenly flaked out. Just like that. I couldn’t take the heat. At the age of about 12, I started getting very bad pains and again I was put into callipers, hand callipers, and I had rheumatic fever and, one of the most horrific things that was done, was to put me into an iron bed in the house. My bedroom was moved downstairs. I can remember my mother and an assistant carrying me out into the garden on a blazing hot day with the Doctor’s guidance, and they covered me with blanket after blanket. Then they put hot water bottles all down the side of me and left me in the blazing sun to try to make me sweat. I nearly died, it was as simple as that. This happened for two or three days running and when they realised that I was nearly dying, they 5 resorted to giving me bee-string injections to get the rheumatism out of me. 80°F’s, I knew I would be paralysed. I still dread hot weather. I was made to wear heavy Wolsey jerseys and vests and pants and hot woollen socks, even in the summer, and it always affected my feet. I couldn’t play games, and then they took me to tap dancing lessons to try to make my feet work. One day I was in the middle of Witney, Oxfordshire and I collapsed with the heat, literally. I saw a pub across the green – it was about 2.30 pm – and I crawled there and asked the Landlord if he had any rooms. He didn’t have any rooms, but he let me lie down on his stone stab floor, and there I lay for a couple of hours until I felt better. Another time I was on my way to do a job at Hayling Island, but never made it. I got to a motel in Basingstoke and stayed there the night. Yet another time I was in London at Shepherd’s Bush on a steaming hot night, and I lay on the pavement outside just not knowing what to do. People just passed me by. I just did not know where to put myself, and I had no-one to call on. There were many episodes like that. You just don’t know where to put yourself. I left school in 1945 and was drafted into the Civil Service as I failed the army test. It was the end of the war, and all young men had to be drafted. I was so conscious of having no hair, that I went round everywhere wearing a hat, even indoors. People were always asking me when I was going to take off my hat. As my jaw got bigger I had a large set of teeth made, but I was born looking like an “old man”. The rheumatic fever also made my hair fall out. To this day people say: “you’ve never changed”. I’ve always looked old. In fact, I was taken for my mother’s husband several times. I stayed in the Civil Service, took exams and became an Established Civil Servant, and then an Accounts Executive. It was lucky being in the Civil Service because I could take annual leave in half and odd days which meant that when it got too hot or we had a heat wave, at one o’clock I could just leave and go home and lie on the stone floor to cool down. Then my father died. I was 31 at the time. My parents had been told that I wouldn’t live beyond 30 and I just thought: “I can’t go on like this. I’m 31 and I’ve passed the 30 mark”. So I just packed it all in. One New Year’s Eve I walked out of a job with a pension and everything and went into the Entertainment business. Initially with a couple of friends I set up on my own, which meant I could take time off in the summers when it got too hot. I did this job for 25 years, and in the summers I had to go home when it was hot and take all my clothes off and lie on the floor to cool down. I would dread seeing the weather forecast if the temperature was over 75°F, and when it would get into the 6 The heat always affected me from my feet first. My feet were the most uncomfortable and I always wore flip-flops, even with my business suit! It was the only way I could work. I had every illness – chicken pox; measles; whooping cough, with asthma as a result; hayfever; pneumonia; and I had dyslexia. Various things happened to my nose. I had a perforated nasal septum and I had polypus, which I had taken out. When I was about 32, I was so fed up with people remarking about my “fangs” that I went to a Dentist who said he could take them out. Of course, I should have been sent to a hospital, but he yanked them out there and then, pushed a plate into the bleeding gums, and put me back out on the street. I nearly passed out. A gap was put in the plate so that people wouldn’t notice too much, but my tongue kept catching in the gap and, to this day, I still have the gap and a lump there. Then my mother became ill and later died, and she had been in hospital for 7 months. I was just getting over it when my whole world collapsed. I was going up the road one day when suddenly my leg gave out. This happened two or three times and when I went to my Doctor, he referred me to the mineral water hospital where I was told it was post-polio. I had always believed that I had polyneuritis, not polio. The doctors I saw weren’t even born when the polio epidemic was around but I couldn’t argue with the medical profession. I had no records to say that I had polyneuritis and they all, to this day, say that I had polio. I was put back into leg callipers over 11 years ago, and had to give up Business. I also moved into a flat because the house I was living in wasn’t suitable as it had no central heating or anything. Then three years ago I moved into a retirement flat. Now I’m alright and when the heat comes on, I just turn on the fan and lie on the floor. I’ve also got a humidifier. However, when I tell people, and I have spoken to doctors, nurses, etc., no-one has ever heard of Ectodermal Dysplasia, and that’s what my whole life has been. No-one knowing. much saliva. Much of the stuff I eat now tastes bland. I think the secret is to tell younger people what it was like for us. For instance, once I bought a wig, which I was never comfortable in as it didn’t look right and was too hot, but when people saw me they used to laugh. You see, they’d got so used to seeing me without hair that I looked funny with hair. I suppose the younger days and teenage years were the hardest. Besides being ill with the heat, there was the teasing. It was murder, but all children do it. When I was an adult, I used to go to dances and I was always the one left sitting out because I wasn’t attractive enough for a young lady. I suppose that was one of the reasons why I’ve never married, and I also felt I never wanted children to go through what I’ve been through. That has always been in the back of my mind. I have found that warm water, in fact anything to do with water and heat, starts me off. I always have a tepid bath. I can’t stand to have a shower. But I only have a five-minutes bath – any longer is difficult. If I get the water too hot, I’ve got either no feeling at all, or I suddenly feel too hot. When I’ve got no feeling I don’t know if, for example I was in scalding water, that I would know that it was scalding, except that I would look down and see that my feet were very red. I belong to a family where no-one else appears to have ED. My sister has never had ED and she has 6 children and 17 grandchildren, none who have anything like me. I’ve asked my cousins and my father’s family, and none of them have anything like ED. But there were 2 children in my father’s family who died at birth, but that was way back in the 1800’s. I go to the hospital twice a year and am monitored. I’m fitted out with smart new splints and am given helpful aids. You are probably asking “How did I find the ED Society after so many years?” ……… A remark by a Medical Consultant, who I had informed that I couldn’t sweat, said “you wouldn’t be alive if you couldn’t sweat”, and this made me determined to find out. This was in 2001! A newspaper article on rare illnesses started me writing to various groups and subsequently I found Diana Perry and the Ectodermal Dysplasia Society. She in turn put me in touch with Dr Angus Clarke who I met and “poured my heart out” to (some of which you have just read); he was the first person who believed me and didn’t think I was mad – I found a name to a condition and I cannot put into enough words the relief I found, after a lifetime I’ve got problems with my nose. When I was a teenager I used to use a nasal douche, a little thing filled with salt water, to clear away the crusting. Now various new things have come onto the market, like saline drops and water drops. I sometimes have problems with crusting, and when I clear the crusts away, my nose starts to bleed, but this doesn’t happen very often. I’ve never had a very good sense of smell and my taste has always been rather limited. I’ve never had very I know of no-one on my mother’s side suffering with the heat, but sadly they are no longer alive. 7 of not knowing. These two people believed me and this was the best gift I have ever had – no amount of words can express my thanks to them. In the war years (1940s) there were no support groups, very few doctors – as many were fighting in the war – no National Health Service and my parents did all they could to help me. I wish they were all alive to know. My own doctors did all they could to help me cope with what was then an unknown cause. To young people who suffer from unknown maladies, I say – keep fighting and asking questions. At the Trustees meeting of 17 November 2001, it was decided that the charity should have an annual membership fee to help towards the running costs of the Society. It has been decided to charge £1 for Full Membership (over 18, with full voting rights) and FREE Associate Membership (no voting rights, or under 18). Please would you complete and return the pink Membership Form enclosed in the New Member Pack. Failure to do so could result in our no longer being able to mail you information. ◘ How I coped with ED, running a business and the events along the way would make hilarious reading. All I want now is to make sure no-one suffers in the same way that I have done, and I will do my best to help bring more awareness of this condition to everyone. ◘ (Editor’s note: I hope you will write more articles John, to include some of these funny stories!). ☺☺☺☺☺☺☺ As ever, we are extremely grateful for your donations which, since the last newsletter, have amounted to £95. These are particularly welcome as we move into new areas, which incur additional costs. Thanks too to those of you who continue to send new stamps to cover postage. Obviously as we grow, the information we are able to share grows too, and it is through your help that we can reach others. Thank you, once again. ◘ Since the last Newsletter, the Executive Committee has met once on 9 February 2002, and is due to meet again on 18 May. Subjects discussed on 9 February were: • • • • • • • 8 Insurance – the Treasurer to obtain Public and Private Liability Insurance for EDS Balance Sheet – to be created, updated and presented to each Executive Committee meeting Publicity – New Member Pack to be created and sent out to all present and future members Medical/Professional Press Release – to be sent out, promoting awareness of Society & ED Press Pack – work continues on creating a press pack, and media guidelines for members Update – Diana reported 10 new members, 2 with rarer syndromes, since last meeting School Protocol – template being re-written to help/guide members when liaising with LEA • • • Expenses – work continues in formulating guidelines and policy Fundraising – Chairman to draw up framework, bearing in mind legal requirements, etc. AGM – approval was given to defer this until 2003, to coincide with the members’ conference. Parental Leave Update Parental Leave gives parents of children the right to take a period of time off work to look after a child, or make arrangements for the child’s welfare. th Parental leave rights were finally changed on 10 January 2002. The new rights are contained in the Maternity and Parental Leave (Amendment) Regulations 2002. The changes will benefit parents of children with disabilities and parents of th children who were under five years old on 15 December 1999 (when the right was first introduced). The main changes are: • Leave is increased to 18 weeks for parents of children with disabilities (previously it was 13 weeks) • Leave is extended to include parents of children who were under the age of five on 15th December 1999 (previously it was only for th children born after 15 December 1999) • Leave is extended to include parents of children who were adopted between 15th December 1994 and 14th December 1999. Who Can Take It? Employees who have a baby or adopt a child on or after 15th December 1999 and who have completed one year’s qualifying service with their employer by the time they want to take the leave. Employees th who had a baby or adopted a child between 15 th December 1994 and 14 December 1999, and who have completed one year’s continuous service either with their current employer or a previous th th employer during 15 December 1998 and 9 January 2002. Points to Remember: • The leave is unpaid • Both mothers and fathers can take parental leave • Employees get 13 weeks in total for each child; parents of disabled children (for purposes of Parental Leave, any child for whom the parent receives Disabled Living Allowance) get 18 weeks in total for each child. For further information, there is a Parental Leave Helpline, run by the Department of Trade and Industry (DTI) which operates Monday to Friday, 9.30 to 5.00 pm on (020) 7215 5986. The DTI also includes a summary “Parental Leave – A short guide for employers and employees” on their Web Site: http://www.dti.gov.uk/er/parental.htm ◘ Thanks to Contact A Family for permission to reproduce this article. And finally … what can I say after such a wonderful testimony from John. It breaks my heart as a mother to read some of his stories, but gives me strength and encouragement to fight for ED to be a more recognised rare disorder by all professional fields and to try and ensure that our children and our children’s children do not have to go through the suffering that people like John have experienced. Thank you so much for sharing with us, John. The Conference is to be held 14th April 2003. I must apologise as I think I confused many of you regarding the Conference dates next year by sending all the information out prior to this Easter holiday. I should be most grateful if you could still complete and return the form enclosed with my letter dated 4th February 2002 regarding the conference, so that I may ensure I have provisionally booked enough bedrooms and rooms for children’s activities. I hope you like the new look of our newsletter. The change in layout is because I am no longer putting the newsletter together but have handed this over to Mary. I would like to take this opportunity to thank Mary on behalf of all of us for the tremendous amount of work she does. What does she do? Well, she is a personal assistant to me by • reminding me of deadlines 9 • • • • • providing me with an impartial listening ear from someone who doesn’t have ED in the family doing the filing and updating all our records completing updates for Health Authorities and other professional databases taking minutes at both the Trustee meetings and Medical Advisory Board meetings typing articles for the newsletter and, of course, putting the newsletter together to name but a few of the many jobs. Without Mary I would not be able to cope with the amount of work we now have. Thank you Mary from all of us, especially my husband and children as with your help I am still able to cook their meals and run their home! We are still desperately looking for a Graphics Art Designer to help with the change of our logo and the publishing of a new leaflet. Please call me if you can help or have a friend/colleague who would be willing to help. We are also in great need of more articles for our newsletters. Please write an article, no matter how small or large, funny or serious, it will be helpful, comforting and interesting to our readers. Many ED individuals and families feel very lonely as nobody around them understands anything about ED let alone what it is like living with all the problems ED brings. Please share. From the enclosed you will see we have been busy implementing the decision at the last meeting of our Trustees to send a formalised member’s pack to all new members. However, to ensure everyone has all the same paperwork and we are not sending odd bits and pieces to existing members, we have decided to send the pack to all members old and new. We are extremely grateful for the extra donation to cover the costs incurred for this mailing. You will notice that there is a pink Membership Application Form. As mentioned in the letter accompanying the Member’s Pack (and this newsletter), and at the cost of repeating myself……it is really important that you return the Membership Application Form……all members, old and new, who return their forms will be added to our new list of members. However, if you do not return your form it will be assumed that you no longer wish to be a member of the ED Society. Even if you have been a member since the Group started back in the 1980s; we still need your form. So please, return the completed pink form today. Diana Trustees (Executive Medical Advisory Board Members Committee Members) Chairman Treasurer Secretary Webmaster Paul Collacott Andrew Ponting Mary Rawson David Wyatt Jean Miles John Moss Diana Perry Ian Perry Mandy White and their fields Drs. Angus Clarke David Atherton Peter Crawford John Hobkirk Stephen Kaye John McGrath Richard Mills Robert Mills Celia Moss June Nunn Helen Stewart Colin Willoughby Clinical Genetics Dermatology Paediatric Dental Surgery Prosthetic Dentistry (Implants) Ophthalmology Genetics, Molecular Dermatology Ear, Nose & Throat Otolaryngology Paediatric Dermatology Paediatric Dental Surgery Clinical Genetics (Incontinentia Pigmenti) Ophthalmology Chairman Disclaimer: The views expressed in this newsletter are taken in good faith and are not necessarily endorsed by the editor or the Ectodermal Dysplasia Society. The use of a product name does not constitute a recommendation or endorsement by the Society. 10