“Back then, there was no newborn screening for sickle cell, so up until we received a diagnosis at the age of 2, my mother had no idea what she and I would have to deal with. At a very young age, pain became an everyday thing, and at the age of 13, after suffering a TIA, I began receiving monthly blood transfusions. At the age of 17, I was put into an induced coma due to acute chest syndrome. Imagine awakening to the realization that you have to relearn everything and may be wheelchair-bound. However, I was determined to walk across the stage for my HS graduation and attended Howard for a couple of semesters.
Over my life, I had over 250 blood transfusions, and my liver was suffering from severe iron overload, and talks of dialysis loomed. I needed a solution. At the time, I was living in Maryland near the NIH, 34 years old, and placed a call to the NIH. They informed me of the gene therapy trial with Bluebird Bio. It took me a year to make my decision to participate in the trial. My mother was very unsure, and out of respect for my mother, I prolonged my period of limbo. After thoughtful consideration and coming together as a family, I received gene therapy in March 2018 at the age of 36.
Post-treatment, overall, I feel great, and now have been busy going after what I thought were opportunities lost to me. Knowing what I have been through and being here now is an indescribable feeling. I am so happy to be working for a company I love, co-founder of @journey2exscellence, and President of the Lambda Delta Sigma Philos, which is an Affiliate of Sigma Gamma Rho Sorority, Inc. Lambda Delta Sigma Alumnae Chapter.
Now that my health is no longer the challenge it once was, I would say this treatment was so worth it!! I have some physical pain that lingers, but I believe that is from damage before the transplant. But I have not had an opioid in over five years!!
For those considering gene therapy, I would say consider and research all options available to you now or on the horizon. Ask as many questions as possible from the medical experts who have administered or will administer the treatment. Consider all outcomes of the treatment and reconcile your emotions with each. Lean on and include your supporters both in the decision and in the process. Make spiritual and mental support a part of your personal treatment plan.
I am a mother, a wife, a daughter, a friend, and an advocate. Post gene therapy, I am able to live my life to the fullest.”