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clinical trials and research

At 16, She’s a Pioneer in the Fight to Cure Sickle Cell Disease

Helen Obando, a shy slip of a girl, lay curled in a hospital bed in June waiting for a bag of stem cells from her bone marrow, modified by gene therapy, to start dripping into her chest.

The hope was that the treatment would cure her of sickle cell disease, an inherited blood disorder that can cause excruciating pain, organ damage and early death.

Sedated with Benadryl to prevent an allergic reaction to the garlicky-smelling preservative in the drip, Helen, who at 16 was the youngest person ever to undergo the therapy, was sound asleep for the big moment.

“Wake up,” her younger brother, Ryan, said, shaking her leg so she could push the button to start the drip. But she could not be roused, so he pushed it himself.

 

Jan 11, 2020
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people

Sickle cell disease is complex on its own, but black men with the illness battle its stigmas and stereotypes too

Doctors didn’t expect Marqus Valentine to live past age 5. The prognosis was so certain that the Valentine family was granted a free trip to Universal Studios to the set of “The Ghostbusters” from a foundation as a dying wish.

Although Valentine beat those odds, his troubles didn’t stop. Diagnosed with sickle cell disease as a baby, he repeated kindergarten because of missing a lot of school due to lengthy hospitalizations and even had a stroke in fourth grade during class, he said.

Growing up during the height of the AIDS epidemic, his classmates didn’t want to play with him because they thought Valentine was contagious. Invitations to birthday parties stopped, and as he got older, he spent the rest of his childhood years receiving monthly blood transfusions, as well as other treatments.

“My peers, no one understood sickle cell,” said Valentine.

The disease is complex physiologically, manifesting itself differently in every carrier, but also sociologically, bringing in factors like racial bias, since sickle cell is believed to be most common among minority groups, particularly African Americans. Historically, there has been limited funding and research dedicated to sickle cell disease, evidenced by only one FDA-approved drug available to the community until last month. The landscape for adults who have sickle cell is much harder than that for children with the illness, and black men specifically may have a harder time dealing with the condition because of existing stereotypes preceding them. A lack of resources for a disease that primarily affects a marginalized community, coupled with negative perceptions of African American males, can exacerbate the navigation of an already complicated, painful disease.

Dec 30, 2019