Another perspective on Rare Disease Day.
Today is Rare Disease Day and this year’s theme is: Day-by-day, hand-in-hand. I personally love that there is a strong movement of many coming together, from all corners, representing thousands of different diseases, all raising their voice together.
Rare disease is a very big part of my life and it’s not something that I have ever been particularly happy about. At 19 years of age I was diagnosed with Chrons Disease, the first of the rare in my family. Everyone felt bad for me. It was very hard to at that young age be dealing with debilitating pain as well as the financial issues that come with needing a lot of medical help. My case was extra special and the normal approaches at the time didn’t work. I was given the chance to enroll in a clinical trial at Mayo Clinic which I happened to live very close to. I…
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