One Of The 900


Today is Rare Disease Day and it’s also my late mother’s birthday. Every year, even if some of her children were older, mom always turned 29. When her obituary had her marked as a year younger than she actually was we all laughed and thought she would appreciate the kind gesture. If only they had said she was 29.

I lost my mother when I was a teenager. I didn’t lose her to a rare disease. I lost her to breast cancer, the disease that I always imagined I would someday get. I had my first mammogram at the age of 35. I was diligent. Every year, a mammogram. Every month, a breast self exam. And yet, somehow, I ignored the lump on my hip. No one gets hip cancer, I said to myself. It can’t be anything serious. 

But it was and now I am a full fledged member of the Rare Disease Club.

Being rare is challenging. It’s like speaking a language that only a few people know and it’s up to you to find them amongst the multitudes of other tongues. But being rare is more than that. In my desmoid tumor diagnosis, in being one of the 900 folks in the U.S. diagnosed each year, I have found a strength I never could have otherwise. I have found gratitude. In an odd way, I have found peace. And, in meeting other rares like me, I have found more love and support than I could ever imagine.

Still, there are things I wish I’d done differently. I wish I’d paid more attention to that lump and not ignored if for as long as I did. I wish I’d taken my time once diagnosed and sought the help of a specialist. I wish I hadn’t put so much stock in the words of one doctor. Now I know. Being rare makes you wise.

If you’re rare, you know. If you’re not, you should. Take it all seriously, every lump and every bump. If you don’t feel right, find out why. If you know something is up, you deserve to find out what it is, but not everyone in a white coat has all the answers. It’s okay to advocate for yourself and find the one that does. It’s more than okay. It’s a must.

If you’re rare, happy day. I hope you are well. I hope you have found the people that speak your language. If you’re not, you very well may know one of us. While our diseases are rare, there are many of us. In the U.S. alone, we are 30 million strong.

And, as always, Happy 29th Mom. You are loved. You are missed.

If you’d like to help me, one of the 900 diagnosed with a desmoid tumor each year, and the many people I’ve come to know and love you can make a donation to the Desmoid Tumor Research Foundation and help fund research that may someday find so many of us a cure.