The story of Scott
I am blessed to live in Seattle, Washington- one of the best places to have an extremely rare cancer! Great doctors and great medical centers! This diagnosis may, however, require a worldwide search for help! I was diagnosed in 2000 with Waldenstrom’s Macrogloulinemia (WM), a rare lymphoma characterized mainly by involvement in the bone marrow, one of around 1,500 diagnosed each year in the U.S. I was diagnosed with an even rarer Bing- Neel syndrome in February of 2015. This central nervous system involvement of WM is an extremely rare complication of this disease that occurs when cancerous WM cells cross the blood/ brain barrier. probably fewer than 10 are diagnosed yearly in the U.S.- maybe less, statistics are very hard for me to come by- cures rarer. Fortunately this is not a young person’s disease. The median age for diagnosis around 60. Thank s all for your prayers!
Meet others living with WM here:Â https://www.rareconnect.org/en/community/waldenstrom-macroglobulinemia