PLANTATION, Fla. -- A grieving Broward County mother is working to garner support for sickle cell survivors who have grappled with an overlooked side of the disease.
A Journal of the American Medical Association study in the May issue linked depression to pain frequency in sickle cell. Advocates said stigma around patients pain management is no small issue.
"If we don't educate people on what pain is like to believe people when they tell you, how are they going to know," said Andrea Hall, director of the Shak's Hope Foundation. "Not everybody is born with compassion."
Hall's daughter, Shakira Martin, had the disease and died at age 30.
Before her daughter's death, the former Miss Universe Jamaica 2011 founded Shak's Hope with the intention of raising support for survivors.
The group hosts brunch events, giveaways and offers advocates to people hurt by sickle cell. The genetic condition breaks down red blood cells and there is no known cure currently.
In Florida, it sends thousands of people to emergency rooms every year, according to the state Health Care Administration. The state has a prevalence rate twice as high as the national average, the administration said.
Then there's the psychological toll.
"The unpredictability of the sickle cell crisis, the judgement and the misunderstanding even among loved ones or family members making patients feel like they're a burden or feel like they're not believing the severity of their pain further contributes to negative mental health," said Maya Bloomberg, a hematology nurse practitioner in Miami.
Bloomberg fills her Instagram page with encouraging messages for sickle cell patients. Her mission mirrors Shak's hope and dream.
"She always wanted to lift spirits and provide the feel good and always talked about how important the small things that we take for granted is everything when you live in pain," Hall said.
During Sickle Cell Awareness Month, Shak's Hope plans to deliver support to Broward Health sickle cell patients Monday.
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