“There is ability in disability,” says Mulikat Okanlawon, a Noma survivor from Nigeria. Okanlawon shared this message on a recent episode of the Global Health Matters podcast with Dr. Garry Aslanyan. The episode was one of two focused on the real-life experiences of people living with neglected tropical diseases (NTDs).
Noma primarily affects children. The disease begins in the mouth and spreads rapidly, destroying facial tissue. About 90% of those affected die quickly. However, if diagnosed early, Noma is preventable, treatable, and not contagious.
For Okanlawon, the disease left lasting physical and emotional scars. She explained to Aslanyan how it deeply impacted her self-esteem.
“It affected me so much that I couldn’t go out or go anywhere. Even if I wanted to, it had to be in the evening, and I would cover my face before leaving,” she said. “I cried all the time when I looked at myself in the mirror. Of course, because I looked different. It really affected me emotionally.”
Noma caused a deep, open wound on Okanlawon’s cheek and nose, also damaging the bone around her eye. As a result, she struggled to eat and speak. So far, she has undergone five surgeries and is preparing for a sixth.
Despite these challenges, Okanlawon decided to take action. She co-founded the Elysium Foundation, which supports survivors in six countries and advocates globally to raise awareness about Noma and improve care for those affected.
Thanks to the tireless advocacy of survivors like her, the World Health Organization officially recognised Noma as an NTD in 2023.
“It changed everything to have Mulikat or another survivor at the table, speaking with decision-makers,” said Claire Jeantet, an award-winning documentary filmmaker who has worked with Okanlawon for over eight years to share the stories of Noma survivors. “It’s estimated that less than 10% of people survive the disease, so meeting someone who has lived through it is very powerful for most people.”
Okanlawon’s journey sheds light on the devastating impact of Noma. Yet, Aslanyan noted that her story is also one of resilience, strength, and the power of advocacy.
‘Hoping to get to heaven’
In the second part of the series, Aslanyan interviewed Dan Izzett, a former civil engineering technician and pastor who has dedicated his retirement to advocating for people living with leprosy.
Izzett developed leprosy as a child but wasn’t diagnosed until years later—after he was already married. By then, the disease had progressed, leaving him severely disabled.
“I like the term ‘fat man with one leg, three toes, nine fingers hoping to get to heaven one day,’” Izzett said on the podcast.
When he was first diagnosed, his biggest fear was the stigma.
“It’s a precast case, the stigma of leprosy—the movies that are put out, the pictures, the jokes. As a young man, I can remember telling jokes about lepers,” he explained, adding that he feared rejection.
Over time, Izzett not only came to accept his disability but also turned it into a force for good. He wanted to help ensure that others wouldn’t suffer as he had. In his case, the delayed diagnosis led to severe complications and permanent loss. His wife, Babs, who also had leprosy, was diagnosed early and never developed any serious issues.
“I have no problem with being called disabled because technically that is what I am,” Izzett said. “I think with self-acceptance, self-proclamation, self-declaration, it doesn’t matter any more that I’m disabled because that’s what I am. In fact, I’ve actually been able to embrace my disabilities and use them to advance our advocacy work.”
Peter Waddup, CEO of the Leprosy Mission in Great Britain, emphasised the connection between discrimination and disability.
“For many people with neglected tropical diseases, it’s not the disease itself that’s the problem,” he said. “Most of them, if diagnosed early, can get the pills or whatever it takes to clear up the disease. But the discrimination stops them from coming forward and acknowledging it. They hide the early signs. And the sad thing about that is—that’s when the disability starts to occur.”
Despite his challenges, Izzett has transformed adversity into purpose.
“You can either live in the negative—you can choose to stay there and dwell on it—or you can live in the positive. We’ve chosen to make it positive,” he said.
