We've all heard about rare diseases. Maybe you or a loved one have a rare disease. And we've all heard about GoFundMe campaigns to help pay for expensive medications. Maybe you've even made a contribution. Unless you know someone with a rare disease it seems abstract. Until it's you.
Summer a year ago, it was me.
I itched. I had a rash. Doctors told me it was nothing to worry about. Dry skin. Try this cream or that ointment. Nothing really worked. Then something more than a rash appeared and they did a biopsy. Cutaneous T-Cell Lymphoma they told me. Very rare—something like 4 in a million—and it comes in all kinds of flavors. Mine is one in several million. (I always knew I was special.) My particular brand of this cancer attacks the hair follicles and because it just looks like a mild rash, it's hard to diagnose. I'd had it for several years.
The doctor assured me that this is manageable. That made me feel better, until I realized that "manageable" means that it's not going away. I'll be dealing with this the rest of my life. But the good news is that in most circumstances, this doesn't shorten one's life. In other words, it's not deadly. If managed. And I'm managing well. I'm responding to the treatments and medication and now, after a year, experiencing very little in the way of side effects. But it will always be with me, and may change over time.
Last spring I attended a symposium presented by the CL Foundation for people with the disease. There I met (for the first time!) others who have what I have. I met doctors and scientists who are working on new treatments. And a 95 year-old woman who has been dealing with this for 30 years and is still going strong. I can't tell you how empowering it was. The Foundation provides education online and at events like that one, supports research, identifies hospitals and physicians who are knowledgeable about the disease, and all-important support.
The medications I take are among the most expensive pharmaceuticals on the market. Fortunately, my insurance has covered most of my expenses so far, but new, more effective, and less costly treatments are needed.
Foundations like the CL Foundation are invaluable for people like me. That's why I'm giving back and asking if you might join me in supporting their work.
Thanks for reading. Thanks for your support.