In 2004, as part of a newborn screening program, Velvet and Jeremiah Watts’ 2-month-old son, Jeremiah Jr., was diagnosed with Sickle Cell Disease, an inherited blood disorder that can cause pain, anemia, infection and other serious health problems.
During a visit with Jeremiah Jr.’s pediatric hematologist, the couple received a book on SCD and a thermometer, since fever can signify infection or another complication, to better understand how to care for their son in his first five years of life. Faced with endless questions about SCD and its impact on Jeremiah Jr. and his family, the Watts found support through the Oklahoma chapter of the Sickle Cell Disease Association of America. There they engaged with other families and helped spread awareness and education of the illness. But, a lack of funding closed the chapter.
Velvet knew she wanted to continue the chapter’s efforts in Tulsa.
“We had to have a place where families could go so they know somebody cares, that they’re not alone,” she says.
In 2009, the Watts and five families from the original group started meeting on their own, and that was the beginning of Supporters of Families with Sickle Cell Disease.
Today it is the only community-based organization in the state that exclusively assists families living with SCD and its associated disorders and traits.
Whether it’s transportation, medication assistance or helping children with SCD go to summer camp, the nonprofit aims to guide families in their day-to-day lives. “We also have begun to expand into advocacy,” Velvet says, including addressing policy protocols for care and engaging elected officials about funding.
Funding has been a challenge since forming the nonprofit, the couple says. “We are always looking for people who want to donate,” Jeremiah says. In Oklahoma, an estimated 1,700 families care for someone with SCD and another nearly 40,000 individuals might be impacted by the Sickle Cell Trait, according to Velvet.
There are several therapies to maintain patient care, but there is no universal cure for SCD. “Those living with SCD require ongoing medical care, as this genetic disease may become progressively more complicated,” Velvet says. “Patients also may experience other health conditions (comorbidities). Patients need more comprehensive care, and continuum of care on the lifespan. Life expectancy may be three decades shorter than the average life expectancy for someone who may not live with SCD.”
In the U.S., most people who have SCD are of African descent, but there also are those with SCD who come from Hispanic, southern European, Middle Eastern or Asian Indian backgrounds, according to the National Institutes of Health National Heart, Lung and Blood Institute.
About one in 13 Black babies is born with Sickle Cell Trait in the U.S., according to the Centers for Disease Control and Prevention. Someone with SCT is unlikely to have symptoms of SCD, but it means they can pass the gene on to their children.
For SFWSCD, the goal is to remain community focused.
Velvet says, “There is hope.”