I was diagnosed with this rare, chronic and “treatable” disease in 1991. At that time, I was told I would die with this disease and not from it. While that has been true for the last 27 years, I did almost die in 1998 from advanced disease. Fortunately for me, I was being treated by several of the best experts in the world and was able to get my disease under control. It wasn’t easy and there were many twists and turns along the way from access to the right medications, costs associated with treatments, time off work, etc. And the journey continues as I am in and out of active treatment. 1998 was a turning point for me when my disease was at its worst and I was facing my last option, a stem cell transplant. Fortunately for me, the radiation treatments worked well enough to eliminate the stem cell transplant requirement. I’m celebrating 20 years from that watershed year, grateful to be living this amazing life with so many opportunities to give back to this rare disease community. As I celebrate my 20 years after this crisis along with my 60th birthday, I am committed to supporting the 20 year anniversary of the Cutaneous Lymphoma Foundation, making sure the vision that Judy Jones, the Founder had in 1998, continues for another 20 years.
Help me help others living with this incurable, rare disease. Your $20 donation will go a long way. Thank you.