My life matters too

By Brittney, Ehlers-Danlos syndrome type 4, United States, February 13, 2020


Rare disease day 2020 has taken on a whole new meaning to me after my one rare diease tried to take my life away from me multiple times in 2019. My names Brittney and I live daily with not 1 but 2 diseases alone classified rare and a slew of other issues. Diagnosed with pseudotumor cerebiri at the age of 17 I thought things were as bad as could be but I was wrong, generics would later find the biggest of my issues, a issue called vascular ehlers danlos syndrome. We were quickly warned that came with risks and in 2019 those came to a harsh and scary reality. 

December I developed svc syndrome and was found swollen purple and near death by my now husband. I spent a month in the hospital trying to recover. Then in may I developed a massive blood clot and in end had a hemmorahic stroke , (50% cause polycythemia Vera 50% cause veds) , I would through the time of 2019 develop svc 2 more times , more mildly before a stent was finally placed. 

Now early 2020 and I have my first injury a ligament tear done simply by rolling it walking. Through my time from diagnosis to now I've continued to have one issue , finding physicians that understand , that don't need to GOOGLE my condition or ask me. This for me means awareness is key. Im a brave cheerleader , love my sport and proudly wear my orange and blue , on that mat people only see me , they can't see my VEDS they have no idea unless they know me how horrible I hurt , how much I struggle to lead a normal life. To them I am just me. A girl truly proud and fond of her sport and team and giving it and life 110%. , cheerleading gives me an escape a place to me free from being different. A place to fit in and be with people who love me for me and the true beauty and warrior I am. 

After practice and competitions end my brave face can come off and my fear can show and the reality of living with and having VEDS hits again. 

My wish and prayer this rare disease day is awareness. We need it horribly. My life truly depends on it. 

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