Skip to main content
Home » Rare Diseases » Why Finding the Right Doctor Makes All the Difference for Rare Disease Patients
Rare Diseases

Why Finding the Right Doctor Makes All the Difference for Rare Disease Patients

As a public health professional, Tonya Nash, MPH, CHES, knew all about the research that shows Black patients receive better care from Black doctors. But she and her family saw just how true this was when their son Nicholas was diagnosed with a rare form of epilepsy.

Life changed for many families in March 2020 when school, work, and pretty much all life events moved online. This time was also a whirlwind for the Nash family as 8-year-old Nicholas had his first seizure on his third day of online school.

“We knew that this school year was going to be different due to COVID-19,” Tonya says, “but this totally caught us off guard.”

Tonya and her husband Jamie took Nicholas to multiple doctors to get answers, but they were repeatedly told this was likely the only seizure their son would have. The doctors were wrong.

Finding answers

As the months rolled by, Nicholas had more seizures. Tonya and Jamie continued taking him to doctors, ordering tests, receiving inaccurate diagnoses, and trying a myriad of treatments that had little to no effect.

The Nash family was finally able to rest a little easier in the fall when they got Nicholas in to see a different neurologist, Dr. Cherise Frazier. Tonya knew her son’s healthcare experience was about to drastically change just because of how easy it was to make an appointment.

“All other neurology offices were telling me it would be months before he could be seen,” Nash wrote in a January Twitter thread discussing the experience. “[Dr. Frazier’s] office agreed to see my son within a week.”

The new doctor, a Black woman who shared the same culture as that of the Nash family, accurately diagnosed Nicholas with Lennox-Gastaut syndrome (LGS), a severe form of epilepsy that affects 2-5 percent of children with epilepsy. While not good news by any means, Tonya notes how good it felt for her son to finally have a doctor that took his case seriously and worked to get his family answers.

Depending on traffic, it can take the Nash family two hours to reach Dr. Frazier’s office, but they’re still gladly taking Nicholas to see her because of how positive the experience has been.

Tonya and Jamie have worked to make their home safer for Nicholas, which has included installing cameras around the house to ensure they know if he’s having a seizure. Tonya added that all of his seizures have happened in the morning, so the entire family, including their older son Daniel, 13, remains vigilant to not leave Nicholas alone during this time.

In addition to being a severe form of epilepsy, LGS is also a difficult condition to treat. Tonya said Nicholas has been on several different treatment plans over the past year, and is currently taking three medications, twice per day.

“In spite of the seizures, our son continues to be a loveable, happy, and resilient little boy,” Tonya says.

Empowering others

“Diversity, inclusion, and cultural concerns for the African American population have recently come to light in a multitude of settings,” says Lorraine Newborn-Palmer, DNP, RN, ACNS-BC, CNRN, CBIS, clinical program manager for the Sandra and Malcolm Berman Brain & Spine Institute in Baltimore, and a member of the Epilepsy Foundation’s Professional Advisory Board. “Conditions such as epilepsy are being discussed more often in the context of historical backgrounds and now in the face of an ongoing pandemic.”

Tonya is doing her part to contribute to the conversation. She has combined her expertise as a public health professional and her experience as a parent of a Black child with a rare disease to educate and empower other families in similar situations.

“There is a level of comfort and trust that comes from having a shared culture with your healthcare provider,” said Tonya. “In spite of all the seizures, our son continues to be a loveable, happy, and resilient little boy.”

Next article