Multiple Endocrine Neoplasia Type 2

As I lay still inside an imaging tube, I think about how grateful I am to be here. I’m at the National Institutes of Health, currently in the middle of my sixth scan in four days. I’ve worked for five months and traveled over 1,300 miles to participate in a research program specifically for my [...]

I gave my son a rare disorder that led to cancer. Not a lot of mothers can say that, and I’m sure none would want to. I also advocated for him and ensured his cancer was taken away before it could spread. At the age of 34, I thought I had almost everything I had [...]

Having a rare disease just might be the worst thing that has ever happened to me, but it’s a bit of a paradox. Having every single, doctor, nurse, resident and medical student tell me how rare I am, again and again, wide-eyed with excitement as if they are giving me a compliment, only adds to [...]