Between founding the first and only sickle cell organization to focus on reproductive health and turning 30, I’ve spent this past year doing a lot of reflection on my own reproductive health, particularly my struggles with fertility.
Thinking back as early as third grade, I was always the girl who wanted six children. I have always loved babies and been drawn to the overwhelming sense of love between my mother and me. My friends would be planning their weddings and designing their dresses, while I’d be picking out names for my children. This desire only grew stronger as I got older. I never imagined anything would get in the way of that vision.
Growing up with sickle cell, I was relatively healthy. My health only started spiraling out of control when I hit puberty, which isn’t uncommon for girls with sickle cell. By the time I graduated high school, the hospital felt like a second home. I had gone through bilateral hip replacement, acute liver failure and a host of other complications. I felt so depressed and defeated. I just wanted to be cured.
As of now, bone marrow transplant is the only known cure for sickle cell disease. However, it’s not universal, easily accessible or without major risks. After being on the Be the Match registry for a year without finding a perfectly matched unrelated donor (very common for African Americans), I was presented with the opportunity to participate in a clinical trial for a haploidentical transplant. For this kind of transplant, a person’s parents are automatically half-matched, which of course makes it much more available.
I remember going into my consultation visit with such a defeated spirit. I was 19, and I wasn’t thriving or living the quality of life I wanted. I was ready to risk it all — except my fertility. I knew that the chemo and radiation necessary for transplant could make me infertile. And when I expressed this to the doctor, I was told, “Don’t worry about this process making you infertile. Because with all your sickle cell complications, you’re probably already infertile — and besides we really just need to keep you alive.”
Imagine hearing that kind of statement when you already feel defeated. It was soul crushing.
Knowing my insurance wouldn’t pay for fertility preservation, I remember doing a Google search to see if there were any financial resources to help with the astronomical costs of egg freezing (a single cycle can cost $6,000 to $20,000, which doesn’t include annual storage costs of $500 to $600). I saw several grants, but they all required a diagnosis of cancer.
In the end, I wound up going through with the transplant. While I was told that the chemo and radiation would be taxing on my body, I wasn’t prepared for the mental war I faced. This was unfamiliar territory. I still remember how instantly devastated I was, when I started losing my hair. Even though I was aware this would happen, no words really prepare you for that.
Anyone who knows me knows, I am a talker. During this time, I would go days without saying a word. I just didn’t feel like myself.
In the end, my body rejected the transplant. On top of that, my bone marrow shut down so I wasn’t making any white cells, including platelets. I was at risk for hemorrhaging and all kinds of infections. I was fighting for my life while also grieving a dream of a new life.
Eleven years and lots of life later, I received a call from my hematologist, Dr. Lydia Pecker. We had just tested my hormone levels for the first time since my transplant, and the numbers were dismal. Dr. Pecker encouraged me to pursue egg freezing while I still had a window of opportunity before facing a major decline in ovarian reserve when turning 30.
When I went looking, I was so disturbed to see that more than a decade later, I could not find any resources or grants for women with sickle cell. I decided I would start a foundation and give away grants, particularly for sickle cell warriors who pursue curative therapies that put their fertility at risk. Dr. Pecker opened my eyes to the fact that this wasn’t just a financial issue — this is a social and reproductive justice issue that requires advocacy. We need to advocate for policies like getting Medicare and Medicaid to cover preservation and family planning costs.
As the conversations continued, I pulled in my now co-founder and chief medical officer, Dr. Kim Smith Whitley, who educated me on the fact that we can’t address fertility without tackling delayed puberty or access to care for pregnant women. It became apparent that our work required a life span approach to filling a huge reproductive health void in the sickle cell community. And it was my board chair, Dr. Ahmar Zaidi, who challenged me to pay attention to what the males in our community go through, including priapism, impotence and erectile dysfunction. Together, we make up Sickle Cell Reproductive Health Education Directive (SC RED), a beautiful reproductive health organization with a global mission to advocate for high quality reproductive health care.
We are in an amazing era where there is a sense of urgency to address health care disparities. For so long we've prioritized survival over quality of life. It’s time for the sickle cell community to be seen. We are whole and to honor that wholeness, our reproductive health must be prioritized.
In 2020, the National Academies of Science published an amazing work of art: Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action. This document lays out disparities within sickle cell care and gives guidance on how to address it. We have so much momentum and an excellent foundation to build on.
The first year of Sickle Cell Reproductive Education Directive has been humbling, generative and at times even painful. At 19, I took even the potential of being infertile very hard but at age 30, it’s even more devastating. Nothing that was said to me 11 years ago could have prepared me for such profound loss. It’s bittersweet — my work forces me to address and confront this diagnosis every single day. But there’s nothing that makes me prouder than fighting to end disparities and offer solutions and resources that I can only wish I’d had.