Rare disease day- a day most people never heard of, ever. It is not a Hallmark holiday but a real thing, that real people experience and survive. I for one never heard of it until I was diagnosed with FAP- a very rare, genetic disease. Then I was diagnosed with another rare disease- Desmoid Tumors. Since then, I’ve been to conferences, participated in a speaking engagement, and am vocal about my disease- all in the hopes of reaching even one person who may feel alone and scared about their future. And I have my daughter who inherited the rare gene mutation for FAP and rocks her life with zest and hope for a happy future. She choose to have her colon removed a few years ago, to save herself from certain colorectal cancer. Smart girl- taking charge over the rare disease. I’m proud of her everyday and all the other FAP and rare disease thrivers out their taking charge of their world! #rarediseaseday2022 #FAP
P.S. I choose this pic to post because it was a carefree day on a hayride to the pumpkin patch about 4 years before we were diagnosed – makes me smile.
Mom & Me & F.A.P. 