Warrior Story of Hope - Kay Diene R.

Defining Strength & Hope!

My name is Kay-Diene Robinson, MPH, CHW. I am 30 years old, and I was born with Sickle Cell Anemia (SS- disease), diagnosed at four months old.

Throughout my life, I experienced 3-5 crises a year. However, in 2012 after a traumatic bout with bi-lateral pneumonia, which put me in a medically induced coma, my crises began to increase to a few times a month, at times.

On September 11, 2015, I underwent bone marrow  transplant in hopes to cure my sickle cell disease. My donor was an unrelated 8 out of 10 HLA match to myself.  Twenty-eight days post engraftment, on October 9th, I was 100 percent donor while in my second medically induced coma.  Two weeks before Christmas, that same year, I was told that I had no sickle cells in my body.

Despite the numerous complications, I endured my quality of life has afforded me an existence that I would not change for the world. Currently, I am 4-years post-transplant, and still receiving childhood vaccines; however, I will not allow that stop me from being the change I wish to see in the world for every individual living with sickle cell.

 

As a patient advocate, I aim to use my experience as a former sickle cell patient to encourage, engage and empower patients to live the best life they have ever dreamed.