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Kelsey’s letter: ‘This disease is nothing but pain and misunderstanding.’

Dear Scientist,

Just like you, my whole life has been consumed by science. A genetic deformity in a single sickle-shaped red blood cell found in the blood of a heel-pricked needle marked the start of a relationship with science that I could never have imagined. Since birth, science has defined me, measuring what my body can and can’t do and grading the severity of what my disease is worth to myself, to others, and to the world.

Much like you, medicine and science have overshadowed and determined every ounce of who I am, what I can accomplish, and who I can be in this world. I’ve been boxed within the margins of medical jargon. Doctors have warned me that I have a life expectancy of 40 years. The irony is the harsh scientific facts of my illness, forced upon me every day, can be both unforgiving and inspiring. I know you, as a scientist on the cutting edge of medicine, have experienced this, too.

This disease is nothing but pain and misunderstanding. Every day, I wake up and am greeted with pain; debilitating pain that takes away the promise of hope and the expectations of what I desire to accomplish. At the start of my day, I have to decide whether to try my hardest to cast that pain aside, or remain defeated. Sickle cell isn’t characterized by a medical definition, but it defines everything I do and every aspect of my life. It affects everyone I love, and who loves and supports me, as they see me ride the hopeful highs and extreme lows of life with sickle cell.

As a child, my sickle cell was more manageable. I would sometimes have to get “ouchies” (or needles) for labs, get antibiotics for high fevers, spend my days getting blood transfusions, and stay overnight in the hospital, but in my youthful eyes I was still normal. Years later, as I started puberty, I began having full-body pain crises that caused me to be hospitalized for about two weeks, every month. During this difficult time I lost every light behind my smile, every friend I ever had, and every pain-free day that proved to me that I was just like everyone else. I had to repeat junior year due to too many absences. I felt like, and still feel like, a prisoner in my body. With each hospital stay, it becomes more difficult to remember what life was like without pain.

Three years ago, I went through an experimental clinical trial at the National Institutes of Health (NIH) in Bethesda, MD, in hopes of curing my sickle cell through a haplo-identical stem cell transplant. Although my mom’s stem cells were at first accepted by my body, they were ultimately rejected after only a month. For that single month, I was relieved of pain and felt like I could do anything. You can only imagine what it was like to have the dream of being pain-free and cured realized, only to have it taken away in the blink of an eye. It was the lowest point of my life, and it was impossibly hard picking myself up from that life-shattering disappointment.

But from the bottom of my heart, I want to thank you for all you do. The long hours in labs, staying up at night studying, researching, testing, analyzing, and reevaluating are minutes that truly matter to me, to us. You are the ones that go beyond the apologizing, talking, poking, cutting, and prodding, and finally take action to change my fate and the fate of many others like me. Every day I am faced with the reality that this day might be my last, this hospital stay might be the one I don’t survive. When I walk into the hospital, I’m afraid that the white blinding lights and cold stark walls will be the last things I see. As dramatic as that seems, it’s true. I have lost close friends to this illness. The burden of death never goes away.

Thank you for working to create medicines, cures, and treatments other than the treacherous stem cell or bone marrow transplant and potent pain pills. With the stigma of drug seeking attached to a disease that mostly affects minorities, it’s reassuring that scientists like you are working toward better medications and treatments. You are working to show me a life outside of pain, and for that I am truly grateful.

Sincerely,
Kelsey Taylor

This content was produced by Boston Globe Media's BG BrandLab in collaboration with the advertiser. The news and editorial departments of The Boston Globe had no role in its production or display.