Help - where can i find scoliosis support?

[BlackRose]

Hi guys,

My DS's godmother has just called me absolutely hysterical and in tears because she has just been told that her 2 year old daughter will have to wear a back brace for 18hrs a day for the next 6-10 years.

I am devastated for her, not only because of this news but because her daughter has had so many other health issues relating to a genetic condition she was born with.

She said to me tonight she was at breaking point and she doesn't know how much more she can take.

I feel so helpless. I suggested she ask the scoliosis clinic to get her in touch with any support groups or other parents who are going through the same thing. Hopefully she can gain some perspective and hope from those parents who are further down the track with their child's physical development and health with scoliosis.

So if there is anyone who knows of any support information or groups that she could get in touch with I would so greatly appreciate it.

I have asked her previously about her own mental health and she is taking anti depressants and is seeing a counsellor. She also has a wonderful supportive husband.

My heart hurts for her

Thanks in advance

[Phteven]

There is a scoliosis forum. It might be a good place to start.
I have very slight scoliosis - not enough for a brace or anything. My sister's bestie had severe scoliosis and wore a brace until her late teens and now you wouldn't notice if you looked at her.
I'll find the forum (I have it in my bookmarks) and add it in a minute. Actually I'll PM it to you. I'm not sure if it's against the guidelines or not

[Rivlas]

Tell her, asap, to contact the closest Children's Hospital and talk to the social worker. They will be able to put her in contact with support groups and also be a listening ear.

If need be offer to help her or even go with her. Sometimes four ears are better than two when faced with a stressful situation

[Arcadia]

That must have been a shock for your friend. Sending some cyber

I hope she can find the support she needs. A brace is to help her lead a normal adult life, but it sounds like a very difficult situation as a parent.

She's lucky to have you as a friend.

[BlackRose]

Thanks all for your help and PM's.

I feel so helpless, for her... and as things are going to be changing for our family in the next few weeks i don't feel like I can be as there for her as I would like because I've got my own stuff I'm going through (i.e having a baby and dealing with a crazy 2 year old!!).

I passed on the information that you gave me so hopefully she gets a chance to connect with other parents on those forums who are going through the same thing.

I guess the only thing I can do is be a friend for her to talk/vent to... I could just hear the devastation in her voice last night... it was so so sad

Wish there was more I could do..

Thanks again!