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springdayzee
08-15-2008, 12:04 PM
Does anyone know where I can go to look for locals that are dealing with scoliosis? I think it would help both me and my daughter if we could find those that are going through the same thing. We are both feeling alone in this journey.

Thanks

Kelly

mariaf
08-15-2008, 01:28 PM
Hi Kelly,

It would probably help us to know what state you are in - I know of a couple of support groups in PA. I'm sure other members know of groups in other states.

Good luck,

springdayzee
08-15-2008, 01:39 PM
OH sorry I guess that WOULD help! LOL I am in TX in the DFW area! Thanks!

Kelly

sparklegirl59
08-15-2008, 01:45 PM
i live in Indiana, and only know of 3 grown-up adults with scoliosis. i wish i knew some kids my age where i live who had it. but what i REALLY wish, is that i didn't have scoliosis.

mariaf
08-15-2008, 01:49 PM
Hi Kelly and Val,

How about trying the local hospitals? Or asking the doctors/hospitals where you go for care? Just some suggestions :)

I know for example that the Shriners Hospital in Philadelphia where my son goes has monthly support group meetings - the group is called Curvebusters - I'm sure some other hospitals offer the same opportunities to connect with other folks dealing with scoliosis.

I also sent an e-mail to a few friends in Texas to see if they knew of any support groups. Unfortunately, they do not live near DFW but it never hurts to ask!

sparklegirl59
08-15-2008, 01:59 PM
hello mariaf,
how i found this website, was by asking my brace maker and measurer if he knows of any support groups or anything in the area. then, he told me about this. i'm glad he did. :) i find such nice people who have the same thing in common with me- scoliosis. i love to come to the forum when i'm feeling depressed, because i know that others like me feel that way at times too. :) i just come on here whenever, just to talk as well. :D i've actually become friends with some of them too. i'm sitting here crying right now, because i am so depressed, and i feel horrible about having scoliosis. this has been a battle that i wish i didn't have to fight. the sadness and depression, and emotions happening through the experience is worse than i could have ever imagined. i don't want to fight this battle anymore! :(:(:(:mad:

mariaf
08-15-2008, 02:07 PM
Hi Val,

Believe it or not, I can relate to a lot of what you're going through.

When my son was first diagnosed he wasn't even 2 years old - so HE had no idea what was going on, but I SURE DID! I was angry, confused and wondered why it was happening to MY kid.

You are not alone. I happen to know dozens and dozens of families dealing with scoliosis - many of the kids are around your age. If you like, I'll try to put you in touch with some of them.

Also, have you checked out Spinekids?

I would also urge you to try to talk to someone - a parent or other relative, or maybe a good friend. I know that they won't understand completely because it is not happening to THEM but it will help, I promise. I know for me a good support system was the only thing that got me through it all. Even though my friends and family may not have understood exactly what I was going through, they were there.

And keep trying to find that local support group. If I hear of any I will surely let you know. In the meantime, try those local hospitals, especially the orthopedic ones. If there is a Shriners hospital nearby, try them as well.

Feel free to e-mail me as well if you like.

Best of luck to you!

Snoopy
08-15-2008, 05:48 PM
Hi Kelly,

I don't know much about Texas, but the Scoliosis Association has groups in the following areas: Austin, Garland, and Houston. If any of these are close to you let me know and I'll give you more information or you can go to the Scoliosis Association's website.


Mary Lou

mariaf
08-15-2008, 07:56 PM
I"m working on a few leads in Texas, too, Val - hang in there!

txmarinemom
08-15-2008, 10:37 PM
I don't know much about Texas, but the Scoliosis Association has groups in the following areas: Austin, Garland, and Houston.

I called the lady ~supposedly~ in charge of the Houston SA group several times (and left messages) and never received a call back from her to even say "I'm no longer involved with this".

Consider *that* one a dead end.

Regards,
Pam

Snoopy
08-16-2008, 07:02 AM
Thanks Pam. The least she could have done was return your call!

Mary Lou

Susie*Bee
08-16-2008, 07:41 AM
Yes, Pam, that's pretty lousy of her...

Val-- I am sending you an email. Hang in there! I've heard (on this forum) that spinekids is a good place for kids your age to meet up and support each other... maybe someone else can tell you more about it. Or maybe you already know! I haven't heard of any support groups in our area at all. I googled and searched for awhile and gave up. (Not today!-- but over the past couple of years.) I think maybe the closest would be Chicago-- and that's way too far for us to go for something like that. And I wouldn't know if there's something especially for kids or not. Chris WBS has mentioned going to one up there. Have you asked your doctor about it? You could call his office and ask if there is a support group for kids...