The story of Amy
The concept of being a Zebra is not something new for me. Since I was young, my multiple health issues have been contributed to common issues – arthritis, IBS, and fibromyalgia. Years ago, a very caring, empathic rheumatologist realized I was a Zebra, not just a run-of-the-mill horse. He sent me to more specialists for further evaluations. Genetic testing showed I have a rare autoinflammatory illness called NLRP12-AID (aka FCAS2) that causes inflammation and immune issues due to flares from triggers such as cold and stress. Further evaluation has uncovered that I might also have a rare form of the connective tissue disease Ehlers-Danlos Syndrome. I’m being evaluated through the Genetics Department at Mount Sinai in NYC soon. If I have the suspected EDS, that means I’m dealing with not one, but two rare diseases! Luckily, through my journey, I have been blessed with some very loving and caring family members and friends. Their support is what keeps me going! Thanks to all people who support and care for us Zebras!