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I need to find a dr. that specializes in this condition. We have talked to surgeons and other medical staff but no one who can give us much help. My Grandson is six and isnow experiencing the broken bones. If anyone could please help me with what to do or what steps are better than others ....Please email me ..I'm very concerned.
Hi,
I too have Ollier's Disease, i was diagnosed in 2006. Im not sure where you live but i went to my doctor who then reffered me to a specialist bone consultant. They now monitor me through having MRi scans every three months and treat me accordingly if its needed. My care has been great and cant fault the doctors. This condition is very rare and its hard to find answers but if i can be of any help just email me.
stay strong
Julia
The following physician may be able to advise you:
Clair A. Francomano, M.D.
National Institute on Aging
Gerontology Research Center
Box 4
5600 Nathan Shock Drive
Baltimore, MD 21224-6825
Tel: 410-558-8201
e-mail: francomanocl@grc.nia.nih.gov
Tank you so much Julia. I live in arkansas U.S.A. My six year old has Olliers and it has affected his fingers on both hands, his wrists ,arms and legs. He had his first break (finger) last week and they plan on doing surgery as soon as it heals. I'm most concerned with his arms. they are now growing at different rates, and of course there is no real treatment . At least to my knowledge and information is so limited on the subject. thank for responding and blessed be. Laurie
My husband's cousin is a physician at the Mayo Clinic and got me a referral to Dr. Patrick Boland at Sloan Kettering in NYC who is a top specialist evidently in this area. As you are in Arkansas, travel might be a problem, but if you look at the hospital website, they often find free seats on private planes to help transport people to Sloan.Maybe you could get a referral from them if it is not feasible. Whatever the case, it is my understanding that this requires continual monitoring. They think I probably had my situation for years, even though I have only recently discovered it.
dear gally, If you note back on other blogg for DJSHORTY. he is a young boy aged 17 lives in USA, and needs help and advice about getting surgery on his fingers , as he has olliers and cannot use his guitar anymore.
he lives in missouri and just moved from arizona.
He did have some surgery on his hands and fingers a few years ago, in arizona , with a surgeon he trusts. but as he has just moved home, he feels abit out of it.
I am not sure how your medical world works, but would someone be able to help DJ, with medical insurance, as you mention a free flight, would this also work , on free surgery, due to the fact that olliers is a rare condition.
On the front news page to NORDS, they posted a page about the late, 'sentor kennedy ' who died a few months ago and he was very proactive in the USA for rare dieseases and i am sure their must be a hospital, or sick kids hospital who could help DJ.
Hope you get the help you need and success with your search and any operations you need.
I am fighting for my son harry aged 16 years old, and hopefully in england, we will get a favourite response for a second opinion and some consultant or surgeon my just help us and my son.
Thank you for being on this website, all the info we need about olliers is here , as i know no other site that helps people ,with info and support from other sufferers.... god bless everyone, take care and keep safe and strong... love louise xxx.
Hi Louise!
This is Max's mom writing (my son Max is 5, with Ollier's). I saw a post from you some time ago in response to some info I found about a possible treatment, and I apologize for not writing again sooner. For some reason, I can't find that chain of posts now.... but I was just curious whether you were able to ask your doctor about that info and what the response was? Some of the info was about the development of injectable bone cement as a possible therapy, and also a possible drug therapy, etc.
(Also, am I the only person who finds this website confusing in the Ollier's category? It seems like the Ollier's postings show up in different places.) I wish there was one single Ollier's group here.... But maybe it's just me! Feel free to email me at jennifer@gildajoyce.com
thank you!
max's Mom / Jennifer
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