what Is rare for me

By Brittney, Ehlers Danlos, vascular type, United States, February 7, 2019

Be proud of who you are


I suffer from vascular Ehlers Danlos syndrome and idiopathic intracranial hypertension 2 rare issues that are a daily struggle. One will in time take my vision , and one day by day is literally damaging my body piece by piece , and a danger of killing me. 

With IIH my body produces to much cerebral spinal fluid causing my brain to literally be squished and the pressure inside my skull to raise. The headaches this causes are intense and almost impossible to treat without a spinal tap. I had brain surgery in 2011 and received my shunt, while not a cure it’s supposed to make life tolerable again. 

Vascular Ehlers Danlos syndrome is another story, it’s a genetic mutation causing every place in my body with collagen to be faulty in my case this includes my vascular system and blood vessels. Yes heart , brain , and other large organs included. I’m prone to prolapse , rupture dislocations , you think of it well it’s possible. Ehelers-Danlos literally means my body is falling apart because the glue that holds me together doesn’t work. It’s effected my heart, and the valves, my kidneys, and joints mainly for now. Thankfully the largest complication I’ve seen so far has been the cardiac effect. 

So what does living rare mean for me , just trying to be normal, or for me “normal” I guess you can say. It means letting people see me but not the illness most days and when it shows through explaining it and praying your not judged because unlike most diseases these don’t leave a look you can see. Living rare to me means doctors who don’t get it , and praying they know the condition so you don’t have to explain it but always being ready to educate them. 

It means daily medications (lots of them) and spending more time alone since nobody ever seems to have time to plan with people sick , and a life in and out of specialist after specialist. Hospital stays, surgeries, scars that tell a story, and then the amazing part:

Being able to shock everyone, being able to do what I love (with modifications / and help) and then having people NOT know your that sick girl fighting this double rare illness (with a bunch of other side issues) because they don’t see it they just see the cheerleader. Happy and smiling doing what they love. So my joints may show off how loose, or funky, and things don’t always go as we plan or see them. And I may sadly get a sharp reminder of my rare life when I least expect it and how scary and dangerous a injury can be but I’m still living my life as me. 

I’ve learned over the years my diseases don’t totally define me I am still the star of my show. 

 

Meet other people talking about living with EDS on RareConnect. Join the conversation, share experiences, ask questions, and discover your support network.

 

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