“Diseases are only rare until you know someone with that disease” – Amy Dockser Marcus
I first read this some eight years ago in an article in The Wall Street Journal, but I only understood what it meant when I suddenly found my life turned upside down.
Six months ago, I was diagnosed with myelofibrosis – a rare type of blood cancer where the bone marrow cells, which are responsible for producing the different cells of the blood, die off and are replaced by fibrous tissue.
These fibers disrupt the body’s normal production of red blood cells (which carry oxygen to all organs of the body); white blood cells (which protect the body against invading diseases); and platelets (which help the body form clots when we are injured to stop bleeding and allow our bodies to heal).
Before this, I never knew what myelofibrosis was. My quick reading on my phone as I drove back after getting my results from the clinic showed that it is a fatal, rare disease that usually hits people over 60, with an expected lifespan of two to seven years after discovery. It very rarely affects young people. Every new piece of information I read came as a shock to me – I was in my early 30s, I was part of a small and very loving family, and I realized I had an untreatable type of cancer.
I spent several weeks in a very, very dark place. I was confused, desperate and had nowhere to turn. The only thing that kept me going was support from my partner who stayed strong to help me through this confusion – even though it was confusing for them as well. (more…)