THE FIBROUS DYSPLASIA SUPPORT SOCIETY (FDSS) is managed by a small committee who are elected by the members at each AGM. They are:
|Chair:||Michael Cantwell||Committee member:||Sharon Burrell-Williams|
|Secretary:||Heather Delaney||Committee member:||Ann Underhill|
|Treasurer:||Heather Wall||Committee member:||Charlotte Urwin|
|Committee member:||Kevin Bittlestone||Committee Member:||Jamie Watson|
Michael Cantwell (Chair)
My daughter Kate was diagnosed with McCune-Albright syndrome at an early age and leads quite a normal life. One issue that is clear is the existence of a vast spectrum of severity of the syndrome. Some people lead normal lives whereas others can be quite badly affected. Moreover, this is compounded with a lack of information and varied approaches to treatment which can lead to a lot of worry. Since I have become involved with FDSS the sharing of experiences has been invaluable to get some understanding on what to expect for Kate and some direction on where to look for treatment of the condition. Getting in touch and becoming involved can help enormously in getting some certainty on a diagnosis.
I feel very privileged to have been appointed chair of FDSS and look forward to arranging future seminars and learning more about new treatments for this condition.
Heather Delaney (Secretary)I was diagnosed with FD in the left femur and tibia in 1989 (aged 10 years old). I had been experiencing pain when walking and was eventually diagnosed with the condition after 6 weeks of tests. During my childhood I had numerous operations where metal was inserted to strengthen the bones as well as numerous bone grafts. I was also diagnosed with a thyroid defect. My last operation was in 2004 where a bone cyst was removed. I have been able to live a fairly normal life and had a healthy little boy in 2005. Over the last 5 years the pain has been increasing and I have been treated for bursitis, but so far there has been no real improvement. I have also tried various bisphosphonates and physiotherapy. Since joining the support group I have much more knowledge of the disease, when I was a child there was no information available as the disease was so rare the doctors were unsure how to treat me. They used to scratch their heads everytime I walked in to their clinic in pain!
Heather Wall (Treasurer)
I've Craniofacial Fibrous Dysplasia affecting 3 facial bones and it is near my optic nerve. I was initially rather daunted when I was first diagnosed as there was very little information known about the condition. After finding the FD Society and attending my first meeting in 2015, I now know so much more about FD.
I try to live a fairly active life and enjoy travelling to new destinations and learning about the different cultures, going to the theatre, cycling and days out with family and friends.
Kevin Bittlestone (Committee Member)Kevin was elected Chair in 2007 at the inaugural AGM. He is older than he cares to admit and leads a full and active life around a full-time job and hobbies (motorcycling, sport, music, photography). Kevin has two grown-up sons who have no FD (it is not believed to be hereditary). He has FD in his left leg and first had surgery in childhood in 1968; this was a graft from pelvis to femur. Although FD was diagnosed at this point, this was not revealed to him or his parents. After then leading a normal childhood and adult life into his 30s, the fact that he had FD was not made known to him until 1987 when a return of symptoms made it necessary to seek medical advice. No surgery was necessary at that point, however a recurrence of symptoms in 2005 made further surgery necessary to insert some 'scaffolding'. Kevin says 'I consider myself very lucky to have had a relatively light brush with FD. The recent 'maintenance' means that I can lead a full life with relatively little restriction, aside from the metalwork getting the airport security people excited! What worries me is the long and tortuous path that some folk have to follow to find the right treatment for this very rare condition, and also the fears that follow diagnosis. After all, most GPs may see FD once or twice in their career so misdiagnosis is so easy. If we can help by providing experience and support through this group then that's great'.
Sharon Burrell-Williams (Committee Member)
My name is Sharon Burrell-Williams and I was diagnosed with Fibrous Dysplasia in February of 2015. The diagnosis happened quite by accident. I was having problems with my left foot and ankle and my doctor sent me for an x-ray and a scan. The result showed that I had what was described as a bone growing within the ankle bone, they also stumbled upon a lesion in my mouth on the jaw bone. I had a biopsy and the results came back saying I had FD. The maxillofacial consultant wasn't very sure what he was dealing with so he searched the internet and sent me information about the FDSS and a sheet about what FD is.
I cannot describe how I felt, here I was at the age of 50 and a bit with a genetic condition I'd had from birth only just surfacing itself into my life. Well that's not quite true. I'd suffered most of my life with different aches and pains in various bones in my body, but was always shrugged off by doctors mainly with you weigh too much or you're not doing enough exercise. I spent most of my life in this bubble of doom and gloom thinking that all that was happening to me was my fault but now I know better.
I used the information I was sent and got in touch with the FDSS.
A year on I still have my problems like hundreds of others of you out there but the best thing I did was make contact with the FDSS and now I'm a member. Although I have still have much to learn the organisation has been a great support to me and could be to you as well.
If you are out there and suffering with issues especially affecting your bones don't stop, be persistent, insist on having tests done, don't let the health professionals fob you off. There is always the possibility you might have a condition called Fibrous Dysplasia. Although very rare it does exist.
Ann Underhill (Committee Member)
I was diagnosed with Albrights syndrome in 1951, when I was ten, and have 14 areas of FD through the left side of my skeleton. Only one of them has ever been a problem, a six inch long area at the top of my femur. I had two greenstick fractures, the first treated by hospitalization for six months without surgery. I was then discharged and given a full leg calliper to wear, my leg fractured again six weeks later whilst wearing it! Another six months in hospital! During the next 50 years I had two or three hair line fractures which were painful for about six weeks but they did not stop me playing squash, going on some very long (250 miles) walking holidays and scrambling up and down mountains around the world. My femur hung on in there until 2001 when I underwent surgery to remove the area of FD and replace it with titanium. I still walk but not so far and lead a very active life. As you can see I also make patchwork quilts.
I got involved with other FD sufferers when I became the UK Liaison for the American Fibrous Dysplasia Foundation. I realized that the needs in the UK were for more information about the condition, how it is treated, and by whom, and a real requirement for patients and/or their carers to meet each other.
Charlotte Urwin (Committee Member)
I was diagnosed with Craniofacial Fibrous Dysplasia in the sphenoid bone in my head at the age of 11. My biggest symptom of my FD is pain in the form of severe headaches with a just noticeable swelling to my eye area. At the age of 10 these symptoms began to appear, and it was 6 months and three biopsies later I was finally diagnosed. It took some time to find the right treatment that would take the pain away however once it was identified I began treatment. Every three months I received an infusion of bisphosphonates at hospital and it was as though someone had flicked a switch and the pain was gone. For the next ten years I was pain free. I carried on through school with a yearly check-up and was eventually discharged to outpatients. My teenage years were as normal as anyone else's and finished with me completing my A Levels. Ten years on I am now in my third year at University studying Mechanical and Medical Engineering. I lead a normal active life and it didn't stop me driving the race car for my University's Formula Student team. At the age of 20 I wanted to find out more about FD, not just the filtered explanations you are given when you are young. Since joining FDSS UK I want to make sure all young people get the opportunity to share experiences, and learn about their FD if they choose to in a fun friendly community.
Jamie Watson (Committee Member)
I remember over a decade ago when complications started happening following the birth of our second daughter, Charlotte. It seems a long time ago now but when I stop and think about it I remember the utter sheer panic of not knowing what was wrong with her or what needed to be done. I think that was the worst thing........... not knowing. Your mind imagines all sorts of terrifying possibilities and as parents we just wanted some sort of diagnosis so we knew what we were dealing with so we could start ..... dealing with it!
Charlotte was born jaundiced which is not uncommon but after following the usual procedeures and them having no effect she was transferred to the special baby unit in Derby. Two or three months later whilst in Birmingham, discussing the possibility of a liver transplant, we started to notice a feint birth mark on her back which we just assumed we hadn't noticed previously.This became more defined over time. When we got her home for the first time at Christmas we noticed some blood in her nappy. We did our own research on the internet and found out about McCune Albright syndrome but it was very difficult getting the professionals to commit to an official diagnosis at the beginning.
Charlotte is 12 this year and in her first year at secondary school as I'm typing this. She has had lots of bone issues with extensive fybrous dysplasia and a few surgeries. She has been on Pamidronate since she was 2 and this has been very helpful for her. She is on letrazole for her endocrine issues and carbimazole for her thyroid. She had her adrenal glands removed when she was very young and has been on daily medication for this since. The one universal truth we have learnt on our way is that this syndrome effects everybody differently and although you will find similarities between cases there can be also be massive differences. This is why the pooling and sharing of knowledge, resources and experiences is so important for these children and the ones who will come after. It also allows us to have a focal point for any research work that may be being done now or in the future.