The story of Brittney

To the world I look normal , happy and healthy. But on the inside I fight a daily struggle , while you may see smiles and get an answer if I’m great my body is struggling to keep up. Most people forget invisible illness exists until you learn somebody close to you is dealing with one. Rare invisible illness is even more shocking to learn of. 

I was diagnosed at 17 with psuedotumor cerebri (this diagnosis did not come easy and has forever changed my life). It continues to ruin my eyesight tothis day , and will until it takes my sight from me. In 2011 I needed my shunt placed via emergency surgery because of elevated post spinal tap pressures (the tap the week prior never helped) and not long after spent time in ICU for icp monitoring (ending with complications).

while people think one rare issue is all you can live with I wound up diagnosed with another A genetic condition, ehlers danlos syndrome. This effects my connective tissues and vascular system. Causing me to be more prone to dislocations , ruptures and chronic pain and loosen joints. I use braces and loads of medications to help. 

I only wish this list was everything wrong . But sadly it’s only the rare list. 

Living with chronic illness , mixed with autism is a challenge. People LOVE saying you can’t do something , and my all time favorite thing lately has been showing people wrong.

Example: People think because I’m handicap I CANT be a cheerleader , so as I get ready for practices and competitions I do it with even more pride then ever. Why …. 1 I love it and 2 because I’m proving people wrong. Yes it hurts , and it takes every single ounce out of me. But it feels AMAZING , it’s been the best therapy and worth the pain. 

This rare disease day my goal is to spread awareness , not just because EDS and IIH need it , but because I’m tired of people thinking because it’s not heard of it doesn’t exist. And ready for more drs to know my conditions!

keep strong fellow zebras 

Find others with Ehlers-Danlos Syndrome on RareConnect, the online platform for people affected by rare disease.

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