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spooniewarrior-eds · 5 years ago

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Living With Ehlers Danlos Syndrome

In 2017 I was diagnosed with Ehlers Danlos Syndrome Type 3 (also called Benign Hypermobility Syndrome). "Benign" seems like the wrong word to use for what I have, because it has completely turned my life upside down.

Ever since I was a child I was extremely flexible, hypermobile, "bendy." As a young cheerleader and dancer, one of my "tricks" was that I could lay on the ground on my belly and touch my toes to my forehead from behind. I was like a circus performer. My mother knew that there was something wrong, but the doctors simply told her that I had a "lax ligament disorder." I was always getting injured, sprains and strains and unexplainable bruising. We had a set of crutches in our house that were adjustable because I was using them so frequently.

As I got older, my injuries became more severe, and my flexibility decreased. I began to have extremely weak wrists, making it impossible for me to be an effective base in cheerleading. I was never able to do cartwheels because my wrists couldn't support my weight without collapsing. In the winter I started to get joint pain so severe that I would cry. My hands would swell and turn bright red. My mother gave me my first Vicodin at 13 to try and decrease my pain.

However, the joint pain was pretty much the extent of my issues up until my mid-20s, so I consider myself relatively lucky. I was with my high school sweetheart until I was 25. I was by far not the same person that he fell in love with when we were 16. I was not only struggling with chronic pain, I was also in the middle of battling bipolar disorder and severe anxiety. His support quickly started to wane, and I felt its effects. We broke up early 2017.

From 2013-2017 I was being treated aggressively by a rheumatologist for what they believed was Rheumatoid Arthritis. I had been on countless medications, injectable chemotherapy drugs as well as an IV infusion of low-dose chemo every 6 weeks. I was SICK. Finally in about March, I was seeing a new rheumatologist who took over the practice and he was going through my chart and said "I don't think you have RA at all."

I'm thinking to myself, "Seriously? What else could it be?" He performed what is called a Beighton Scale Assessment in his office and I scored 8 out of 9, indicative of EDS. He immediately stopped all the RA meds I was on and sent out a request to my primary for a referral to genetics, who I saw in August of 2017.

So fast forward, I've been diagnosed at Brigham and Women's Hospital with EDS Type 3. At this point I have done quite a bit of research and everything made soooo much sense. At this point, these are the symptoms I'd had that were related:

- Soft, velvety skin that bruises easily - Hypermobile joints - Frequent subluxations of the joints - Delayed walking as a baby - Frequent ligament and tendon injuries

Between then and now I have seen a cardiologist, neurologist, and gastroenterologist (that's a whole story in itself). I've been told that I will likely require specialist care for the remainder of my life.

I have been extremely lucky to have the support system I have. My mother is my biggest advocate, and I am now in a relationship with a man who not only supports me, but understands what I'm going through (he's a two-time survivor of Non-Hodgkin's Lymphoma). He doesn't find my issues gross or annoying, and he's actually fascinated by my condition and wants to know more. He even found out that his step-sister ALSO has EDS, which blew his mind. He's affectionate and loving, checks in with me regularly, and doesn't treat me as though I'm made of glass (that took some convincing). My dad took a while to come to terms that this is a condition I will have forever. When I'm having an acute problem, though, he just sees that I'm sick. He doesn't see that this is a chronic problem and that I have to learn to live with it.

I'm hoping that this blog will help fellow EDSers realize that they aren't alone. I want to educate others and help people advocate for themselves. I will hopefully be writing a book someday on my experience. For now, this blog will be my space for EDS information, humor, and my life experiences. Maybe medical professionals will come across my blog and become more aware that this is an illness that is highly under-diagnosed.

#ehlersdanlossyndrome #eds #chronicillness #medicalblog #zebra #chronicpain #benignhypermobilitysyndrome #hypermobilitysyndrome

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