Local doctors study rare tongue disorder disproportionately affecting Black people

HOUSTON – Doctors at UT Health School of Dentistry are hopeful an endowment will help them better understand a rare disorder affecting African American patients.

Karen Washington had her blood drawn Tuesday morning. The Katy mother of five is helping a group of oral surgeons at UTHealth better look at her DNA to figure out why her tongue enlarged back in 2017.

“It was outside of my mouth not just a little swollen,” recalled Washington.

The 50-year-old suffered a stroke three years ago while teaching first-grade students. She was rushed to a hospital for emergency surgery and was intubated for two weeks.

When she woke up from her coma, Washington said her tongue was protruding out of her mouth. The condition, called Macroglossia, prevented her from talking or eating for six months.

“I had a tube in my throat to help me eat and to help me breathe because I could only suck through a straw,” Washington said.

A Florida man traveled to the Texas Medical Center last year for surgery after his tongue enlarged while being intubated in a hospital for COVID-19.

Dr. James Melville, an oral surgeon at UTHealth, successfully performed surgery on both patients, who shared commonalities.

“So the most common link obviously is the ethnicities, they’re Black,” said Dr. Melville. “Second was long-term intubations.”

Melville said of the five patients he has seen with the rare disorder, all of them were Black. The oral surgeon and his team hope to figure out why that is through a $5,000 endowment awarded to UTHealth.

Victoria Manon, an oral and maxillofacial resident at UTHealth, said they plan to use blood samples from the patients they have treated for Macroglossia to examine those patient’s genetic makeup.

“If we are able to pinpoint some things that predispose patients to this condition. I really think this will help them out later on because we’ll be able to look out for those things better,” Manon said.

Melville said that information could help doctors preventatively treat patients prior to them forming enlarged organs.

“We want to identify early in if someone does need to be intubated. We can do a quick screening and identify if someone has a chance of forming this angioedema (swelling) or macroglossia,” he said.

Washington said she gladly assist the team that helped her regain her quality of life.

“Whatever it is to help somebody count me in,” she said.

Melville said he’s in the process of contacting former Macroglossia patients to have their blood drawn for the lab analysis. He hopes the study will be completed in the fall.