Worcester teen on mission to help people with Sickle Cell Disease after seeing his sister’s struggle

He’s a ‘big biochem buff’ on a mission to help those with Sickle Cell Disease -- and that’s because Kweku Akese has watched his younger sister live with the condition for 14 years.

“Sickle Cell Anemia is a blood disease that essentially misshapes one’s blood cells,” said Kweku. “Instead of the blood cells being shaped like a round disk, they’re shaped like a crescent moon.”

And that has two primary effects. First, the crescent-shaped cells lack the durability of the normal round ones -- and so they only last about 1/5 as long. With red blood cells turning over that quickly, the body gets less oxygen. So fatigue and lack of energy are common, everyday side effects. Second, the shape of the cells can clog up blood vessels -- leading to a number of serious complications -- including stroke, blindness and severe, localized, pain incidents known as crises.

Kweku has seen his sister go through a few of these crises -- but he said the main pain she’s complained about over the years has to do with the frequent blood testing required to manage Sickle Cell.

Bloodwork often involved multiple needle sticks because nurses had trouble finding his sister’s veins, he said.

“It’s not a fun day, especially if you have nurses poking, trying to find the vein,” he said. “It can be super painful.”

Last year, Kweku, a senior at the Massachusetts Academy of Math and Science in Worcester, began an internship at UMass Memorial Medical Center. And that is where he learned about ‘vein finders’ -- devices that use Near-Infrared Light to quickly locate veins -- and thus virtually eliminate the need for multi-sticking. .

Kweku initiated a fundraising effort to help UMass Memorial, where his sister is treated for Sickle Cell, purchase a vein finder.

“We’re trying to raise around $3,000 for a single vein finder,” Kweku said.

Of course, a hospital the size of UMass Memorial really needs more than just one vein finder -- and Kweku would like to see all patients benefit from its use -- so he’s probably not stopping at fundraising for just one.

He’s also not stopping his explorations into better treatments for Sickle Cell. Last year, for his junior science project, Kweku experimented with adding a Fluorine molecule to a primary drug used for Sickle Cell, hydroxyurea. His hope was to create a more effective drug, and he chose fluorine because... well...

“Fluorine is something that’s super electronegative,” he said.

Of course it is. Who didn’t know that?

Despite his vast knowledge of chemistry and biology, Kweku said he’s not just interested in concentrating on research when he grows up. He’d like to be an advocate, too, for patients dealing with diseases, he said, that seem to go unseen.

“If the world did end up forgetting about Sickle Cell, I would just try to remind them that, as a society, I feel like it’s our job to make sure that everybody is included,” Kweku said. “Just making sure that everybody, no matter what your disease is, feels seen.”

If you’d like to help Kweku Akese raise funds for the vein finder, click here.

This is a developing story. Check back for updates as more information becomes available.

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