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The Barriers Black Families Face When Confronting Rare Disease

Mason Hadley, Photo: Courtesy of The Hadley family

A mother recounts her journey of finding proper care for her son when he was diagnosed with a rare form of epilepsy.

Caring for a child with a rare disease is difficult for any family. It can be nearly impossible to find a physician who is able to correctly diagnose and offer treatment for the child’s condition, and a cure may not exist at all.

People of color face even more barriers to finding proper care. A history of abuse and racism still permeates our healthcare system today.

Deavin Arnold-Hadley and her family experienced the gravity of this crisis when they were seeking diagnosis, treatment, and support for their son who had a rare form of epilepsy.

“When we began our journey, we had no idea how to advocate for our son,” she says.

Searching for answers

Arnold-Hadley and her husband Chad had Mason, their second child, in 2010. Mason was hitting developmental milestones early on, but he began showing symptoms of epilepsy around age two.

“It was excruciating to watch Mason endure hundreds of seizures a day,” Arnold-Hadley says. “We felt helpless watching his cognition and personality deteriorate.”

It took consultations with multiple doctors to properly diagnose Mason with Doose syndrome, a rare, catastrophic form of epilepsy that accounts for less than 2 percent of all childhood-onset epilepsy cases.

However, just because they knew what was going on with their son didn’t mean treatment would be easy to find. Doose syndrome has no known cause or cure, and Arnold-Hadley reports her son wasn’t being invited to participate in the clinical trials that other patients with similar conditions were benefiting from.

“That created unnecessary burdens that compound the fact that Mason struggles with a rare disease,” she says.

Many of the treatments Mason were offered came with devastating side effects and unknown long-term complications. The family eventually decided the best course of action was to try putting Mason on a medical ketogenic diet, which is designed to mimic the effects of fasting and get the body to use fat stores as its main source of fuel. Research has shown the diet to be effective in mitigating epileptic symptoms, especially for Doose patients.

“Our family made the decision to turn away from traditional forms of medicine and start focusing on new therapeutic methods,” Arnold-Hadley says.

Fortunately, the diet was a smashing success. Now 10, Mason is still using a keto diet to manage his symptoms while he engages in homeschooling.

Lending a hand

The Hadley family’s tale underscores a health crisis at the intersection of rare disease, race, and culture.

“Diversity, inclusion, and cultural concerns for the African American population have been highlighted in a multitude of settings recently,” says Lorraine Newborn-Palmer, DNP, RN, ACNS-BC, CNRN, CBIS, a member of the Epilepsy Foundation’s Professional Advisory Board. “As an ethnic group, conditions such as epilepsy are being discussed more often in the context of historical backgrounds and now in the face of an ongoing pandemic.”

Arnold-Hadley has used this experience to empower and advocate for others. She’s spoken to medical professionals on behalf of The Black Women’s Health Imperative, shedding light on the damage a delayed diagnosis and treatment plan can cause. She’s also been a keynote speaker at epilepsy-related conferences and retreats.

“It’s so important to find the right medical provider for your family,” Arnold-Hadley advises other parents facing similar situations. “Some physicians were not a good fit for our family. We were able to find one that worked together with us and didn’t just tell us what to do. We made medical decisions together.”

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