I was diagnosed at 3 days old with this condition. When I was younger I never saw myself as different and could do most things any other child would do. Each year I would go get my annual x-ray and check-up to see how everything was progressing, especially my scoliosis. As I grew I really played sports religiously which the doctors credit with allowing me to avoid back surgery. Because of growing muscles in my back as I grew it actually corrected my scoliosis considerably!
I really started noticing differences between me and others my age in my teen years. Mostly because of appearances. When I hit I think 16 I had a black out episode; not to scare anyone, the doctors don't believe it is related to the condition but have no explanation for it. I have had two more since. I have had some kidney infections that were not harmful to my kidneys, and developed moderate stenosis of the lumbar.
Since reaching adulthood, which the doctors never thought I would do without surgery and proved them wrong on all accounts, I have had some set backs but overall I love life. I can walk, talk, going to college, working, driving, roller skating, karate, and I even take every opportunity to educate people about the condition.
The only thing I wish for people and families with this condition is for you to never feel like your alone because I am here at almost 22 years old. I have never met anyone like me or any family whose has anyone like myself, I have only had one wish, and that is to meet someone like me.
If you have any questions, or would like to chat just message me or comment :)
Karate100 Karate100
22-25, F
1 Response Aug 21, 2014

Very inspiring! I have this diagnosis as well. And actually wasn't diagnosed until I was about 21 years old, I'm almost 25 now. It was just thought that some virus attacked me while I was a fetus. I've never met or seen anyone with this condition either. I'd love to chat! - Christina :)

Hi, I would love to chat. I would think it would have been difficult to be told you have this later in life. Did they ever think to test you when you were young? Shoot some questions my way if you'd like.

Do you live in North Carolina too?

Yeah it was tough to hear. It was an emotional time. It was good that I had some answers (not many) though. Do you have Facebook? No I live in California-- Los Angeles area

yea i have fb it's under "Katherine Riddle, Burlington, NC". Well, you're the first one I have had a conversation with that was here in the US.

How crazy. I guess there aren't many of us. I added you!

You got that right. I think there are more it's just that they may not really seek out people like themselves or may not like social media; people of the older persuasion. All of the others I have conversed with have been mothers of children affected.

I found out that this is nicknamed "torso dwarfism" although it looks the complete opposite of the stereotypical dwarfism of short limbs, regular trunk or proportionally small stature. We have long limbs, short torso. Interesting

I added you on fb-- not sure if you saw. My name is Christina Marie from Simi Valley, CA

Yea I accepted. Sorry for the late accept I haven't been on the computer for a while. But it so nice to have person who can understand me in a way :) Hope you're doing well

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