Danielle’s News: Ehlers-Danlos Syndrome

Greetings from Columbia!

danielle

I’m typing this as I have just gotten done with exams. Talk about stressful. I’d rather sit in a room with 2 gastroenterologists than sit through another art history exam.  But, it’s done and done. Now I can focus on summer and keeping healthy.

What I would really like to talk about right now though is somewhat of old news to me, but it may be quite interesting to some of you. For years now, I’ve been prone to easy bruising, limber body parts, and flexible joints. I thought it was just another quirk about me.

Around the age of 18 (I’m 19 soon to be 20,) I started to have pain all over my body. I had intense pain in my toes, my chest, and my wrists. It got to the point where I couldn’t open a door without my wrists feeling like they were going through a shredder.

My parents took me to several different doctors, including a rheumatic specialist. I received MRI’s on my wrists and chest, and guess what? I had broken cartilage in both of my wrists and torn cartilage in between my sternum and my rib. I couldn’t take a breath without it hurting my chest and I couldn’t cut my steak without wincing.

The doctors said it would heal with time, but they didn’t really have reasoning as to why it had happened. There were theories about me working out too hard, but those theories seemed to disappear when I stopped working out and I didn’t get any better.

Anyways, after months and months, I got an interesting phone call from Dr. P (Phillip Putnam in Cincinnati, basically a miracle from Heaven.) He said that he and his team had been doing a lot of research, and there was a high correlation between people with EE and people with something called Ehlers-Danlos Syndrome (EDS.)

We immediately flew up to the dreary state and met with about 11 different doctors, who at the end of the week diagnosed me with EDS. Don’t worry, I’m not going to die anytime soon (hopefully,) but basically EDS is a culmination of symptoms that affect all connective tissue. Connective tissues include things like your blood, joints, cartilage, and ligaments. Within EDS, there are 6 main types. I’m not going to go into all of it here, but basically each type of EDS defines what’s going on with your body.

Personally, I have type 3, which is hypermobility. It explains why I can put my thumb behind my middle finger (it’s a sight to see,) and when my legs are straightened they actually go past 180 degrees.

While in Cincinnati, I met with pain psychologists, pain management, and juvenile rheumatologists who specialized in EDS. I was told that because of the EDS my body was going to take longer to heal the cartilage. I was told that while physical therapy wouldn’t heal me, it would strengthen the small muscles around my joints, in order to protect them in the future.

This hasn’t really been a “feelings” post, but more of an informational post. Dr. P told me that there is a high correlation, so just pay attention. Read up about it, be informed, but don’t bite your nails off in the process.

While I have encountered obstacles, (swimming and my shoulder pops in and out like a Pop-Tart, taking off a shirt and my shoulder blade gets locked, things like that) I have also learned that it’s just another bump along the road. Yeah, it can be embarrassing sometimes. I went from being an SEC athlete to having to squeeze a dumb little rubber ball. I went from putting 200 pounds on my back to having to open the door with my elbow. But then again, it gave me the opportunity to tell you guys about it. To keep you informed. To maybe give your child a light for the future. And in the end, that’s what matters. I guess that’s it for now! If you have any questions, feel free to email (since I don’t have to sit in art history anymore ha ha.)

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