From the outside, there is nothing about successful, busy attorney Brenda Adimora that hints at a disease she has fought all of her life. She maintains an active practice as a labor and employment attorney and was chair of the board of trustees of the Houston Young Lawyers Foundation.
But Adimora was born with sickle cell disease, a group of inherited red blood cell disorders that results in lifelong illness.
According to the National Institutes of Health (NIH), sickle cell disease affects more than 100,000 people in the United States and 8 million around the world. The disease causes the hemoglobin that carries oxygen in blood cells to become misshapen (crescent- or sickle-shaped). When the cells sickle, they do not bend or move easily and can block blood flow to the rest of the body, including the organs. The classic presentation of sickle cell disease is a vaso-occlusive crisis.
Modupe Idowu, MD, professor of hematology with the Department of Internal Medicine at McGovern Medical School at UTHealth Houston and the director at UT Physicians Comprehensive Adult Sickle Cell Center, has been treating Adimora since 2019. Idowu has also served as a mentor to Adimora’s younger sister — a hematologist who also specializes in treating patients with sickle cell.
Idowu said people with sickle cell anemia genotype HbSS, like Adimora, can become very ill. Earlier this year, Adimora was hospitalized in an intensive care unit for eight days.
“That was a very severe sickle cell crisis,” Adimora said. “I haven’t had a hospitalization like that since I was a child. I remember things as a child like going swimming or severe changes in temperature were really triggering.”
During the acute sickle cell crisis, Adimora experienced extreme pain in her joints, a symptom common of a sickle cell crisis, and underwent much treatment, including a blood transfusion.
“I think being in the hospital kind of reminds you to slow down and that you can’t let other things bother you or stress you out to the point where you have a serious health crisis,” Adimora said, referring to juggling the demands of her busy life and chronic health condition.
Adimora first heard of UT Physicians Comprehensive Adult Sickle Cell Center through a friend who also has sickle cell disease. At the sickle cell center at UTHealth Houston, patients are able to receive timely care for pain episodes, obtain organ-specific specialist care, and receive preventive medications for the disease.
One of those medications is hydroxyurea. Adimora took part in clinical trials for hydroxyurea as a child.
“I think I’m really responsive to hydroxyurea, so I’ve been taking that my whole life,” Adimora said.
The drug works by inducing fetal hemoglobin, which carries oxygen more efficiently. Hydroxyurea also hydrates the red blood cells, making their shape rounder and more flexible, so they don’t stick to blood vessels as much.
“Hydroxyurea appears to repair blood vessels, and we believe that it repairs organs, because all this mechanism of action will help the blood flow,” Idowu said.
Adimora is also taking voxelotor, which is in a class of medications called hemoglobin S polymerization inhibitors, according to the NIH’s National Library of Medicine.
“The mechanism of action is by increasing the binding of oxygen to the hemoglobin S,” Idowu said. “By doing so, red blood cells are not sickling or breaking as much because they have the oxygen they need.”
Leading-edge advancements in therapies for sickle cell disease are giving more hope for patients like Adimora. For certain patients, transformative therapies with potential for a cure like a blood and bone marrow transplant or gene therapy may be options, according to the NIH.
Adimora said everyone has their own battle, and living with sickle cell anemia is hers. She tries to be optimistic, and with new updates in medical research and more discussion about sickle cell in the media and entertainment, she is hopeful for the future.
“I think a lot of eyes are on sickle cell now, and if they’re not, they will be soon,” Adimora said.
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