The Toll of Traveling Hundreds of Miles for Treatment Because I'm Rare

I live in a town of fewer than 35,000 people with only two aged hematologists about to retire, five general surgeons, and one hospital. My splenectomy was my surgeon’s third. Before surgery, we tried just about every chemical therapy it was reasonable to try. I was refractory to them all. And yet, still, I had to ask to be sent 244 miles away for a referral to another hematologist because the two in my small town were not up-to-date on my disease and had the mistaken belief that there was a high risk of bone marrow fibrosis with the latest medications. This research is more than 10 years old. But for most people with my diagnosis, it’s easier to just throw some prednisone at them and call it a day.

- By Colin Justin for

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