I have Ehlers-Danlos syndrome... now what?

Question

I definatly have it.. The doctor has said so sevreal times, but shes never done anything about it..

I looked online and some forms can be life threatning.. Im scared.
Im only 12 so its not like I can drive myslef someplace where they can help me... And my parents are super busy, Ive asked them a couple times to bring me somplace but they dont have time..

Is there a a way to "self" diagnose wich type I have?

If you want theres pictures on my question "im a freak".
Go check them out..

And now my joints are super achy too... =/

Answer 1

YOU NEED TO SPEAK WITH YOUR DOCTOR! GET ON THE PHONE WITH HIM OR HER AND ASK THEM WHAT IS GOING ON WITH YOUR BODY! Seroiously, asking people online is really going to get you few good answers, because anyone can pose as a doctor. Looking online as well is just going to depress you and potentially alienate yourself from what the doctor or your parents tell you. Remember, you are not in this alone, you have parents and friends and doctors who can and will help you understand. Please do take me seriously, as i understand what you feel like right now.

So take small steps, get out your yellow pages and make some phone calls to your doctors. Talk to your mum and dad, and tell them what's on your mind.

Remember, you are not a freak because there is something not working right in your body.