Any advice zebras?

Question

I have hyper mobile ehlors danlos syndrome and I was diagnosed a little over a year ago and everything is getting worse the dislocations, subluxations, stomach issues. Any advice? I’m 16 and it’s awful I’m a competitive dancer so it’s not that I’m not strong but it’s rough. I’m going gluten free as well any advice for that? This is a jumbled post but I just want answers.

Answer

I’m not yet diagnosed and I’m just 2 years older than you, but the odds I don’t have hEDS are very slim unless it’s somehow another form of EDS. I personally have never had a full dislocation to my recollection, though I have had countless subluxations.
I was competitive in TaeKwonDo (not sparring though.) and I would just casually look to see if my knee was where it belonged and if not, I’d fix it myself. (Of course this often hurt though). 
I am not sure what advice I have to give on avoiding these issues, but I wanted to say this:
BE VERY CAREFUL WITH DIETARY RESTRICTIONS!!!!
I also have POTS (half diagnosed i guess. Can’t be official for the following reason, in fact). 
As well as mental illnesses. 
About two or three years ago I developed anorexia. 
One of my reasons I started restricting and meal skipping was my mysterious GI pain. There were many other problems that led to this too though. 
My main point is, you are a sixteen year old competitive dancer. With a chronic illness which likely causes some mental anguish as a result when it comes to dancing especially. You are also dealing with GI issues. 
If you aren’t dealing with one already, you are at great risk of developing an eating disorder. Just please keep that in mind and be careful  and vigilant of warning signs.

Answer

You need to be under the care of your geneticist and primary doctor. I have Marfan and Stickler syndrome which are similar to elhers danlos. I'm 34 and things have been getting worse physically, lots of pain flare ups and joint issues. It doesn't seem like many doctors know much about connective tissue disorders so it's very hard and frustrating. My geneticist helps me a lot and orders things I need done when I'm having issues. I hope you can get some help soon 💕

Answer

I have Ehlers danlos and I’m a competitive swimmer. People say it’s cool but it’s honestly really annoying. I find that a lot of just stretching occasionally makes it harder to dislocate something, etc.

Any advice zebras?

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