Does anyone know anything about Ollier's Disease?

[Mistletoesnowman]

I know it's rare so am not holding out much hope but would welcome a chat if anyone does.

A querulous bump!

I hope you find someone Mistletoe. I suppose you have been in touch with Contact a Family?

Good luck

Well I found some stuff on there that just petrified me which is why I wanted to chew the fat here where I'm comfortable. It's a 1 in a 100,000 thing so I'm not hopeful. I've certainly very rarely met anyone in rl who's heard of it.

Oh dear

I dont know anything about it other than what I could google and we all know the pitfalls of that.

Is it a chromasonal disorder? If so Unique may be a good contact.

Sorry if I am just telling you things you know already but at least I am bumping

Heres hoping someone can help.

Yes that's the problem. I googled it and have terrified myself. Oh well it was a long shot.

Mistletoe I work in a specialist children's centre. I often come across information re conditions and disabilities. If I find anything I will let you know. Another long shot but its worth a go.

Try not to get too freaked. Can whoever dianosed you/your child give you contacts. If not the consultant, the specialist nurses are usually better at that sort of thing.

Good luck.

Gosh I can't remember who it was it was that long ago. I've had it for years but stupidly googled it yesterday and am now totally freaked by what I read - basically increased risk of cancer and brain tumours. Apparently people with it normally get monitored regularly - something that no-one had ever mentioned to me. I'm lucky in that my case is a mild one - some of the stories of what it can lead to are pretty horrible - but it seems I've been given literally no information on it. DH thinks I should go and have a chat with the GP about it but no GPs have ever heard of it.

The perils of the internet!

My OH has MS. We have found it best to avoid researching any information at all. We deal with things as they crop up. The spectrum for many conditions are so wide you can drive yourself nuts!

There has got to be someone who knows about it somewhere! There is always someone.

How frustrating for you.

I've booked to go and talk to the GP. I am lucky as my case does seem to me relatively mild but I'm concerned that have never had a fuill scan to assess how much of the bone is affected.

I hope you get some reassurance Misletoe.

Its likely things have moved on in the field since you were diagnosed and you may get better information.

Heres hoping and good luck.

Thanks Chegirl. Appreciate you taking the time to talk to me.

Chegirl I don't know if you ever have a look back at this thread but thought I would let you know that I went to GP and talked her through my worries. She said she thought all my questions were valid and I have been referred to an Orthopaedic Oncologist which is progress but has made me totally freak out!