In October 2014, I was handing out candy to my neighborhood’s tiny ghouls and goblins, but the scariest thing that Halloween was a phone call from my doctor. My heart pounded as the doctor told me I had myelodysplastic syndrome (MDS), a rare blood disorder in which the bone marrow stops functioning properly. My current MDS diagnosis is refractory anemia with ringed sideroblasts. My treatment consists of red blood transfusions and Reblozyl® injections.
I recalled that the doctor said, “Get a piece of paper, and write it down.” She had to spell it three or four times because I was so nervous.
It has not been easy for me to adapt to the realities of my condition. The treatment involves frequent blood transfusions, self-administered injections, and expensive medication. To stay motivated, I adopted a motto, “get busy living,” borrowed from The Shawshank Redemption. It is a maxim that embodies me to the fullest.
I am a powerhouse when advocating for my condition, treatment, and the advancement of scientific research. I have traveled from the beaches of California to the Capitol steps as an advocate for MDS patients. Since 2015, I have been a volunteer patient advocate and member of The Leukemia and Lymphoma Society (LLS) as a First Connection volunteer and a Light The Night (LTN) volunteer. I am also on the Patient Education Council for the AAMDSIF. I was recently appointed as AAMDS Support Group Facilitator for the Western United States. I credit LLS, this phenomenal organization, for supporting me and my roller coaster journey with MDS.
I believe my role as a patient advocate is especially important as an African American woman since African Americans are underrepresented at advocacy events. I want others to know they are not suffering alone, and that I am with them.
More than anything, I do not dwell on my diagnosis. I make the most of my time by speaking up for patients, following the latest research and treatment options, and surrounding myself with positive people. “It is my mission to have a better quality of life.”
Joan
Myelodysplastic syndrome (MDS)
