Sickle cell anemia is a genetic disorder that affects blood cells and their ability to move freely throughout the body. The cells become misshapen, making it harder for them to carry oxygen to the organs and extremities. Strokes, organ damage, and daily pain are some common symptoms of sickle cell disease, which predominately touches the black community in the United States.
Researchers are also learning about sickle cell’s impact on fertility and sexual health. For women, chronic inflammation and sickling (elongation) of blood cells in the ovaries can negatively affect fertility. For men, sickled blood can jam inside the blood vessels of the penis, and that can cause painful erections that last for hours. Called priapism, this condition can damage sexual function and decrease sperm count.
What’s worse is that many patients seek bone marrow transplants as a treatment option, and bone marrow treatments often require chemotherapy as an additive. Chemotherapy almost always affects fertility, too, making a sickle cell diagnosis a bit of a choice: seek treatment (which can cure the disease but ruin fertility) or endure the pain.
The earliest depictions and descriptions of sickle cell disease popped up over a century ago, but the disease has never garnered much research funding or buzz. There are even less resources to help treat fertility issues as a result of a sickle cell diagnosis.
Can white people get sickle cell anemia? Yes, but it’s most dominant in African American communities
In the U.S., health insurance coverage for fertility preservation and treatment is buried in the fine print, and varies from state to state. Only 11 states have laws that mandate coverage for fertility preservation for patients who undergo treatments that could imperil their ability to have biological children – usually referred to as iatrogenic treatments – like chemotherapy or radiation. But of course, insurance companies often take latitudes when it comes to the paperwork, hoping to skirt responsibility when the time comes for fertility treatments.
Teonna Woolford has seen firsthand the negative effects that sickle cell can thrust upon daily life, especially when trying to conceive. A patient herself, Woolford became infertile at just 19 years old due to bone marrow transplant chemo (which didn’t even cure her sickle cell).
Recently, though, Woolford launched a new nonprofit, The Sickle Cell Reproductive Health Education Directive, to raise awareness of fertility issues at medical conferences. She said a future goal for the organization is to provide financial grants to patients struggling to pay for fertility treatments. Most days, Woolford, 31, finds the work empowering, she says. On other days, she feels saddened by the bleak personal reality that she will probably never conceive a child.
“It’s really hard, because I don’t think a lot of people realize that I’m fighting for something that I didn’t have access to,” she says.