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:||Glen Erskine|
|Secretary:||Heather Delaney||Committee member:||Kassim Javaid|
|Treasurer:||Heather Wall||Committee member:||Sarah Russell|
|Committee member:||Kevin Bittlestone||Committee Member:||Jamie Watson|
|Committee member:||Steve Bullock||Founder member:||Ann Underhill|
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'.
Steve Bullock (Committee Member)
After completing a career within the Civil Service in the areas of electronic engineering and computer IT security Steve retired and now works in the Charity Sector supporting the British Red Cross. He has a daughter Victoria (Vic) with McCune Albright Syndrome who has also been paralysed for 12 years. Having been diagnosed with MAS 26 years ago and very much having had to research the condition from scratch initially, he and the family look to utilise their experience and knowledge gained in the last 27 Years dealing with Vic's condition to the benefit of other sufferers of the syndrome. Having only been a committee member for just under a year, the benefits of being part of a like minded group of individuals is inspiring and will hopefully lead to supporting breakthroughs in the research needed to deal with FD and MAS.
Glen Erskine (Committee Member)
In 2016, our daughter Cara then aged 11 was diagnosed with McCune-Albright Syndrome (MAS). We live in the Moray area of Scotland and are being supported by the Aberdeen Children's Hospital. Cara's life has been turned upside down to a certain degree and we are now on a journey which will last a lifetime. Cara is a twin and her sister is unaffected. We as a family are all affected in many different ways by MAS and we all support one another; Cara at times is the main cheerleader. Like many out there MAS is something we had never heard of, including many medics. I found the support provided by FDSSUK to be invaluable and it encouraged me to become a committee member. Like all parents I regard my kids to be one in a million; now I know Cara truly is.
Kassim Javaid (Committee Member)
After completing medical training at Charing Cross and Westminster Medical School, Dr Javaid specialized in adult rheumatology. During that time, he completed an ARC Clinical Fellowship at the University of Southampton and then ARC travelling fellowship at UCSF. He is Associate Professor in Metabolic Bone Disease/ Honorary consultant Rheumatologist at Oxford. His research interests focus on rare diseases of the bone in adults.
Sarah Russell (Committee Member)
I was diagnosed with fibrous dysplasia in 1982 on my 9th birthday whilst in hospital having had my first bone graph operation (of three) to my right femur. Luckily I hadn't broken it but I had had severe pain for at least 6 months prior. My main site for pain is still my right femur and whilst I have many affected bones, my right hip is the only ongoing issue. Other associated problems are gynaecological as a result of McCune Albright Syndrome. I was diagnosed with this officially via a blood test in 2005 during antenatal screening during my pregnancy with my eldest child. This answered a lot of questions I had been having regarding early menstruation, ovarian cysts and infertility. I also started Pamidronate back in 2000 for 18 months which I then stopped as I hadn't started a family yet. This I restarted again back in April 2009 and I'm a mum of two now. Pamidronate has helped with the bone pain and I managed to work as a nurse for 20 years. I've recently retired from my last post as Matron due to the hours and impact on my health. But I'm still very proud of managing to work for as long as I did as a senior nurse in some of the busiest Hospitals in London.
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.
Ann Underhill (Founder 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.