🦓 A Tale of Two Zebras 🦓
February 28th is Rare Disease Day, and Chiyo & I are here to spread awareness about our rareness🎗
Evans Syndrome Survivor, Chiyo, is a true medical miracle having beaten a rare form of vaccine induced non regenerative haemolytic anemia concurrent with thrombocytopenia. Both humans & animals can be affected, and when there is a clear cause, such as in Chiyo’s case, it is classified as Secondary Evans Syndrome. Usually most will die from this incredibly rare disease, but with the dedication of the incredibly talented vets at VMCLI & Massapequa Pet Vet of Long Island, NY, Chiyo made a full recovery and lives his best life as a full time working service dog! Chiyo & I work together to give hope & spread awareness & treatment options for Evans Syndrome patients all over the world.
And then there’s me- I was born with a genetic defect that means my body does not produce a vital blood protein, known as c1 Esterase Inhibitor. Without it, my blood vessels leak fluid into my tissues, and my body has no way of regulating the inflammation- picture the girl from Willy Wonka when she blows up uncontrollably! Though having Hereditary Angioedema won’t turn me into a blueberry, I can die from the unregulated swelling episodes that frequently happen all over my body, and so far, my case has been unresponsive to the very few management therapies that are available today. No cure exists yet, but I’m hoping that with further exploration in genetic research, one day my story can have a happy ending, too.
The journey to a cure can be daunting, but it all starts with awareness. And whether you have beaten or are living with a rare disease, you are a pioneer in medicine who can help make a difference. Speak out on rare disease day today and let your story be heard! You can learn more about rare diseases like mine & Chiyo’s at NORD online: visit rarediseases.org
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