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Cat Eyes
04-14-2009, 06:40 PM
hey guys its KAtelyn here!!

Okay so in my area there are of course kids with scoliosis but there are barley any group talks or group dissucions on scoliosis. some times at clinics i talk to other people that have scoliosis but i usually never see them again. so please i want to arange some online talks, please send me a message and tell em a date that we can talk, i will confirm if i can, and then we can talk at my profile page!! we can also get group disscusons together, that would rock a lot!!! thank you!!!
also i have a wuestion, you people that do not need to wear it most of the day like only at night and stuff, why is your time limite3d when i am forced to suffer 18 hours a day???:mad:

rtremb
04-15-2009, 02:06 AM
Katelyn:

You might be able to hook up with some children your age at the SpineKids website. It is at: http://www.spinekids.com/boards/

There is lots of written on-line chatting going on between members on this website but it is monitored so it is safe for kids to use.

Just a suggestion...........

Ruth

Snoopy
04-15-2009, 07:12 AM
I agree with Ruth. Spinekids would probably be a great option for you because it is monitored very closely. Are your parents aware of your idea of a chat? They need to be aware of this so they can help you screen people involved.

On the subject of your brace......18 hours is a minor amount of time compared to some people. A lot of people have to wear their brace 23 hours per day/7 days per week which means they can only take it off for their shower. ;) Give it time....you'll get use to your brace and hopefully it will prevent you from ever needing surgery.

Mary Lou

Snoopy
04-17-2009, 07:22 AM
hey guys its KAtelyn here!!

Okay so in my area there are of course kids with scoliosis but there are barley any group talks or group dissucions on scoliosis.

also i have a wuestion, you people that do not need to wear it most of the day like only at night and stuff, why is your time limite3d when i am forced to suffer 18 hours a day???:mad:


I noticed that you are in York, PA. My daughter and I run a Scoliosis Support Group in Hershey, PA. Let me know if your parents want more information.

Above you mentioned that you "suffer 18 hours a day" with your brace, but in your private message you said you are wearing it 21-23 hours per day. Remember, every person's Scoliosis is different and therefore so is their treatment. Some braces are designed only to be worn at night and of course most people only sleep 8-10 hours per day (okay, we parents sleep a lot less!) so they can't wear their brace longer. Some kids only need to wear their brace 23/7 for a year or two and yet others wear theirs 23/7 for 10+ years. At 13, I would guess you won't need to wear it for many, many years. Try your best to wear it as your doctor prescribed, whether 18 hours/day or 23 hours/day.

I'm glad to hear from your pm that your parents are aware of your use on this site. As a mom, I worry about kids on the internet. There are a lot of people out there who are not who they say they are and I wouldn't want anything to happen to you. I liked Spinekids for my daughter when she was younger because it is so closely monitored and they do offer live chats.

Mary Lou

S4Sarah
05-18-2009, 08:51 PM
Spinekids is nice, if you have a facebook there are also groups on there. If you do have a facebook I would suggest making everything private.
As Mary Lou said you do need to be extra careful on the internet.
It would be a lot of fun to have like actual groups and get togethers. There are a lot of people at my school with Scoliosis and Khyposis. Some even had surgery. two girls one in my Math class, and another in my English class both had rods put in. They are basically all better now so they don't really have Scoliosis anymore, just rods.
Mary Lou I would love to come to the Scoliosis support group in Hershey as you know from Spinekids that is where I go for my appointments. But it is like a 3 hour drive there for us one way. Maybe if people in my area, (if there are any) want to get together or something we could. But I highly doubt there are any members on here near where I live. We only have like a few hundred people on here.

Balletgirl77
11-01-2009, 12:02 PM
I suggest spinekids like the above posters. As for the 18hrs, I had to wear my brace for about 3 years for 22 hours a day, and a friend I had, had to wear it for 23 hours a day, so there are many people that have to wear it longer than you, be happy with your 6 freedom hours :)