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For patients with sickle cell disease, fertility care is about reproductive justice

Teonna Woolford has always said that when it came time to build a family, her ideal would be to have six kids.

Why six?

"I don't know where that number came from. I just felt like four wasn't enough," says Woolford, a Baltimore resident. "Six is a good number."

Woolford, 31, was born with sickle cell disease. The genetic disorder affects patients' blood cells. They become misshapen, which makes it harder for the blood to carry oxygen and flow throughout the body. This can cause strokes, organ damage and frequent bouts of excruciating pain.

Sickle cell disease affects an estimated 100,000 people in the U.S. and the vast majority of them are Black. Federal and charitable dollars dedicated to sickle cell pale in comparison to other less common diseases that affect a majority white patients.

Physicians and researchers say the disease is a stark example of the health inequities which pervade the U.S. health system. A poignant expression of this, patient advocates say, is the silence around the impact on fertility, and lack of reproductive and sexual health care for the young people living with this complex disease.

Crushing hopes for fertility
Woolford has lived through the entire gamut of sickle cell complications. By 15, her hip joints had become so damaged that she had to have both hips replaced. She was dependent on frequent blood transfusions to reduce pain episodes and vascular damage, and her liver was failing.

"So many complications, infections, hospitalizations, and so by the time I graduated high school, I just felt defeated [and] depressed," says Woolford, who first spoke with an NPR reporter from a hospital bed in Baltimore, Maryland. She'd experienced a sickle cell pain crisis a few days earlier, and was still receiving pain medication and intravenous fluids.

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