College student from Chicago describes her EDS

Laura, A 20-year-old from Chicago, describes her issues with EDS.

Laura“Hey everyone! I’m a 20 year old college student who got diagnosed with EDS when I was 16. I’ve always had incredibly large, permanent bruises on my shins which tear open and bleed beyond easily. I’ve made many trips to the ER where doctors hopelessly stared at my gaping wounds and simply couldn’t think of what to do because my skin is so fragile. It’s actually so fragile that one time I hit my shin on a bench, and I ended up chipping off a part of my bone. I’ve only heard of one other case that was similar to me in this instance.

I also have the type of EDS that particularly attacks your mouth with periodontal disease, my teeth are expected to fall out in my 20’s, so you can imagine the dental hassles I go through on a daily basis….on top of that I very much have TMD, my jaw pops in and out every time I open my mouth, I recently haven’t been eating hard foods because it hurts so badly.

I will admit I’m “lucky” in a sense that I don’t have the hypermobility and dislocation issues that others deal with on a daily basis, however I do have arthritis in my knees. And I do get the popping of my knees, hips and elbows out of socket.

This is NOT any easy disease to live with, not only when you’re older, but especially when you’re younger. You don’t expect your teens/20’s to be filled with pain and fear of getting hurt all the time, people don’t understand the struggle behind your eyes because it’s such an unheard of disease.

I’m personally from Chicago and I’ve been to almost every specialist and doctor out here regarding EDS, and either the doctor has to leave the room to Google the condition, or they call every nurse/intern they have to common observe this rare medical phenomenon. What I’m saying is I’m looking for people to reach out to, this is difficult and you need people in your life who personally know what it’s like.”

EDS symptoms can vary from one type to the next, and from one individual to the next. Laura’s dental issues are particularly severe compared to other EDSers.  She has very fragile skin, but feels fortunate that her joint hypermobility symptoms are less severe than many.

Post edited by: Laura7698

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