My Show Your Stripes Story 🦓
In honor of Rare Disease Day today, here’s my Show Your Stripes story:
In June of 2018 I was diagnosed with a rare circulatory disease called idiopathic cutaneous small-vessel vasculitis. In layman’s terms, this basically means that at any given moment the small blood vessels in the surface of my skin can spontaneously swell until they explode, resulting in the surrounding tissue either dying off or becoming ulcering wounds.
As a result, in the last 8 months alone nearly 70% of the skin from my mid calf to my toes has become scar tissue. I more or less look like I’m a perpetual victim of measles or some other plague. I like to joke that I now basically resemble an urban snow leopard from the knees down.
Jokes aside, my condition is not effected by diet or exercise. However, standing or sitting in a chair for more than an hour or two greatly increases the likelihood of a flare up which can make walking difficult or painful at best. Sometimes the tissue and joint swelling can get so bad that it requires me to use a crutch just to walk. My skin perpetually feels bruised and sore to the touch even on good days.
Being diagnosed with this rare circulatory disease has altered my working environment, and greatly impacted my ability to attend conventions or even a 2 hour movie. To make things worse, my rare disorder is one of the over 90% of rare diseases for which there is no treatment or cure. That being said, it’s not fatal for the most part. And so like many afflicted with a rare disorder, my life has become an exercise in pain management.
Thanks for reading my Show Your Stripes story and I hope you’ll take a moment to share this video, and help spread the awareness of rare diseases & disorders. And if you are also one of the millions world-wide with a rare disease or disorder, I encourage you to Show Your Stripes for Rare Disease Day
If you’re feeling particularly awesome & have the ability, please consider donating to NORD (the National Organization for Rare Disorders).