EARLY YEARS: Virginia teen with rare disease launches nonprofit to encourage youth to advocate for their heath

FAIRFAX COUNTY, Va. (WDBJ) - Classwork by day, A.I. innovation by night.

Khartik Uppalapati is a young man with a mission.

It all started when he was diagnosed with a rare lymphatic disorder in 2021 at the age of 12.

“I was diagnosed with lymphedema and malformations of the hip, both which are very rare diseases. And you know it was very difficult, because it was in the middle of a global health pandemic,” says Khartik.

Khartik faced not only the medical challenges of his condition, but also an emotional burden.

“I felt alienated. I didn’t have many resources to learn about my disease,’ he says.

That’s when he looked to A.I. to research not only his own condition, but other rare diseases.

Eventually, his research led to the creation of the RareGen Youth Network.

“A.I. allows me to use limited amounts of data, scientific intuition and reasoning and then combine them to make models to think on their own and infer patterns,” explains Khartik.

He uses what he calls experimental validation to see if his A.I. findings translate to real world results.

“I view it as sort of a stepping point to create a larger movement of getting youth involved in rare diseases and bringing it to the mainstream,” says Khartik.

As for his own prognosis, he has treatment to manage his symptoms, but doctors still don’t know the cause of his illness.

His hope for the future is to engage other children and teens with chronic or rare illnesses to become their own advocates.

“I’d say advocate for yourself. Look if you don’t tell people what’s going on, the hardships you face, no one will take action. But if you’re really vocal about it, people will start to notice.”

You can read more about Khartik’s journey here.