About Us
THE FIBROUS DYSPLASIA SUPPORT SOCIETY (FDSS) is managed by a small committee who are elected by the members at each AGM. They are:
| Chair: | Kevin Bittlestone | Committee member: | Elizabeth Littlewood |
|---|---|---|---|
| Secretary: | Lisa Scoates | Committee member: | Sarah Russell |
| Treasurer: | Jamie Watson | Committee member: | Sue Szablewski |
| Committee member: | Heather Delaney | Committee Member: | Ann Underhill |
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Kevin Bittlestone (Chair)
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'. -
Lisa Scoates (Secretary)
I am 37 and live in Worthing, West Sussex with Ian, whom I met three years ago and our 2 cats, Pebbles and Disney.
Ian has Fibrous Dysplasia and McCune Albright Syndrome. Not surprisingly before meeting Ian I had not heard of either FD or MAS, however I am keen to know more about the condition, including forms of treatment and support.
I first attended a FDSS committee meeting in August 2010 with Ian, the information and experiences shared by the speakers was inspiring and moving as well as being extremely informative. I hope by being a committee member I can be of help in raising awareness of the conditions.
I work for West Sussex County Council as a Childcare Development Officer and some of my time there is spent supporting voluntary childcare organisations. This can range from giving advice on funding applications to offering support and guidance to groups in times of crisis, such as at Extraordinary General Meetings.
My work can sometimes be challenging and so to relax I like to watch football. For over 20 years I have been a season ticket holder at Brentford Football Club attending games with my Dad and my late Grandad. I have managed to persuade Ian to join in the fun and he too now holds a season ticket!
Living by the coast is something we both love and we frequently take walks along the seafront to blow away the cobwebs!
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Jamie Watson (Treasurer)
My daughter Charlotte has McCune Albright Syndrome of which Fybrous Dysplasia is a major part. At the time of writing this Charlotte is nearly 8 years old and during those 8 years we have been on a very steep learning curve trying first to learn about the syndrome and then the best ways of dealing with the numerous issues it raises. We found the information in the UK very disjointed and limited at best and gained most of our knowledge from the very nice people we met in the USA. I feel that a contact point in the UK is a very worthwhile idea and am happy to support it in any way I can. I hope to see a resource and information point established and for UK networking to be enabled for people affected.
Charlotte has McCune Albright Syndrome which involves the main 3 area's of Fybrous Dysplasia, skin pigmentation and other major endocrine issues. She has extensive FD in lots of areas and has had 2 surgeries for these and numerous fractures since she was born. These have reduced since she started on Pamidronate infusions from the age of 2. She is also on letrazole that helps with her bone age and endocrine issues. She also had her adrenal glands removed as she was Cushings when born. Apart from that and a few other meds she is a happy, inquisitive and very very talkative little girl who we love enormously. Please feel free to cantact me and I would be happy to talk to anyone affected and hopefully learn together through shared knowledge.
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Heather Delaney (Committee Member)
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! -
Elizabeth Littlewood (Committee Member)
When my daughter was born in 2000, I thought my greatest surprise was that she had red hair that grew straight upwards. Little could I have imagined the journey we were starting! Over the following days and months, she developed the classic triad of symptoms of McCune Albright Syndrome, café-au-lait birthmarks, endocrine dysfunction, particularly precocious puberty, and fibrous dysplasia. She started treatment for precocious puberty when she was three. Since then, she has taken part in two clinical trials at Great Ormond Street Hospital and is currently in a trial extension. She also has treatment for excess growth hormone because, unlike most MAS girls, she is very tall. She has fibrous dysplasia, primarily in her facial bones, which affects her vision slightly. However, most importantly, she is happy and healthy. She is doing well at school, plays the piano, swims, and loves playing with her friends. We have learned a great deal and made many friends along our journey and I hope our experiences will help us support other families. -
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 have restarted again April 2009. Pamidronate has really helped with the bone pain and keeps me leading a pretty active life. I am currently running around after a 2 year old and a 5 year old! My other achievement is doing the one job they advised me not to do as I would be on my feet all day.....nursing. I am a ward sister on a busy medical admissions unit in a London Hospital and wouldn't change this for anything. -
Sue Szablewski (Committee Member with responsibility for medical liaison)
I was born in Coronation week 1953 and was diagnosed with McCune Albright Syndrome when I was two. I suffered precocious puberty and have extensive Fibrous Dysplasia. The precocious puberty lead to the early closing of my growth plates and I eventually grew to 4 ft 8 inches. I have been married to Frank for nearly 33 years and we have three healthy daughters. Because of my short stature they were all born by caesarian section two weeks early to prevent me going into labour. I have six grandchildren, two girls and four boys and they are nearly all taller than me now. I have been treated with Pamidronate infusions since 2001. I have a part time job and do voluntary work for a number of organisations as well as being kept busy by my family and this, I feel, helps me forget my own problems and keeps me going. -
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.