Durham woman living with rare condition training for New York City Marathon

A Durham woman is training to run in the New York Marathon to benefit and bring awareness to the fight she and others have had...

Posted 10:00 a.m. May 9 — Updated 2:51 p.m. May 9

Ryan Bisesi

, WRAL multiplatform producer

DURHAM, N.C. — A Durham woman with a rare genetic condition is striving to take on new challenges and embrace her gifts.

Iris Mustich knows life is a marathon, not a sprint. Mustich is 29 and lives with tuberous sclerosis complex (TSC), a rare genetic condition affects approximately 1 in 6,000 live births and causes non-cancerous tumors to grow through the body's vital organs.

She's excited about bringing awareness to the condition and to show that, she's running in the New York City Marathon this year. As far as a finishing time, she said she doesn't have a goal in mind and just completing the race would be a big milestone personally. Mustich has run in a few half-marathons, but is eager to tackle this new frontier one step at a time.

"I would love to run it in less than five hours," said Mustich, who has signed up for a marathon training program.

The marathon isn't until the fall, but May is TSC Awareness month and Mustich is running in support of the TSC Alliance, an advocacy group for those living with TSC.

The University of Michigan graduate moved to the Triangle in 2021 and works in clinical research.

Mustich was diagnosed at two years old when she experienced complex partial seizures. Finding doctors who are knowledgeable about TSC and help with caring can be challenging for some patients. She questioned her plight when she was younger, but learned to adapt and has taken on a prosperous career.

"I was always asking 'why?' she said. "That was hard because my friends don't have to take medications or have these tests all the time."

Mustich had never run a mile until college where she would run the bleachers at Michigan Stadium while training to be part of the rowing team.

Mustich is currently running around 20 miles a week and wants to join the Bull City Running Club to get ready. Mustich has had a lot of feedback from people with TSC. Some people have forwarded her songs that remind them of their journey with the condition so that she can listen to them while training.

"I'm not just running for me, but I can think of all of them when I'm running as well," she said. "You don't always meet people in person or anything but it gives you a little bit more of a understanding of what they might be going through."

The marathon is scheduled for Sunday, Nov. 5.

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