Spotlight Newsletter | Sickle Cell Support Fund

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A disease that affects much more than the body

We need your help to launch the Sickle Cell Support Fund

IF YOU DON’T HAVE SICKLE CELL disease (SCD), it’s nearly impossible to understand its devastating impact.

Jomo Marsh, a 22-year-old student and gymnastics instructor, is one of more than 100,000 Americans with SCD, a hereditary blood disorder. “You feel so alone when you have an SCD crisis,” he says. “Family, friends, co-workers—they can’t understand. There’s no way to help.”

Two or three times a year, Jomo suffers an SCD crisis. His red blood cells cramp up into a crescent shape that makes them clump, hindering their flow through blood vessels. The resulting pain is so intense, he feels as though his bones have fractured throughout his body. His last crisis put him in the hospital for a month.

And yet, Jomo has been relatively lucky. He hasn’t experienced some of the more dangerous consequences of SCD: anemia, infections, fatal organ failure, tissue damage, and strokes.

SCD crises strike without warning
And they can last for weeks at a time, making it difficult to stick to any rou¬tine—including employment. “Employers like to be flexible, but at the end of the day, they need dependable workers,” says Jomo. “When you have SCD, you can’t control what happens. Sometimes it leads to losing your job. Soon you are struggling to buy food for your kids or pay for your medication—or keep the electricity on.”

That’s why Jonathan Spodick, a clinical social worker at YNHH’s adult sickle cell program, asks your help in launching the YNHH Sickle Cell Support Fund. The fund will help SCD patients in crisis to pay for food, medications, clothing, transportation, and utilities.

Jonathan and the dedicated staff of his department often find themselves reaching into their own pockets to help patients make ends meet. But their generosity doesn’t go nearly far enough.

“You can’t find a disease where people have greater needs,” says Jonathan. “Since it’s genetic, it affects multiple generations. It can have a devastating impact on the well-being of entire families.”

There is no cure for SCD
Until a cure is found, those who have the disease will have it for life. They can do nothing but try to stay as healthy as possible—while they wait for the next crisis to strike. “You never know what’s going to set it off,” says Jomo. “I’m always waiting for the other shoe to drop.”

Jomo is studying for a degree in exercise science—focusing on how to improve health with physical activity. “My goal,” says Jomo, “is to help lighten the load of people with SCD.”

Please help our patients fight their battle against SCD. Donate generously to the new Sickle Cell Support Fund.
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