Sick Cells Blog

A Rare Disease that Faces a Common Problem by Marqus valentine

Approximately 100,000 people in the United States have sickle cell disease (SCD). That makes SCD a rare disease, and one that is often misunderstood or disregarded. As I’m one of those “rare” people with SCD, I will soon be traveling to Rare Disease Week on Capitol Hill in DC. On February 26, 2019, I’ll be joining other rare disease advocates, to stand boldly before Congress and illuminate the realities, resilience, and passion within our community.

Because of SCD, my red blood cells are misshapen and clog my veins and arteries. This disease has damaged my organs and my bones and threatens my life.

When I have a sickle cell crisis, my body is not getting adequate oxygen and I am in terrible pain. In the past, at the hospital emergency room, staff have assumed I was a drug addict looking for a fix. Without my family to advocate for me, that ignorance could cost me my life. It is long overdue that these perceptions change because these moments have dire consequences for us all.

I am not alone in facing hurdles as a result of a lack of public and health provider understanding of my rare disease. The lack of public awareness and dearth of effective treatments are common problems shared by other people with rare diseases. That’s why I’m excited to meet with other rare disease advocates, so we can not only share our stories -- but link arms to push forward together.

So, please stay tuned to my updates from Rare Disease Week. I’m so excited to share my experience every step of the way, as this moment means so much to me, my family and the Sick Cells team. We are all in this together. Yes, #IAmRare, but I’m not alone.

Marqus Valentine is a co-founder of Sick Cells, a non-profit dedicated to improving the care and quality of life for people living with SCD, including ending the stigma of SCD, by shaping public policy and educating the SCD community as well as society overall. More information is available at SickCells.org.