Fighting sarcoidosis: 10 News Anchor John Carlin discusses his battle with rare disease

By Lindsey Ward - Anchor

ROANOKE, Va. - Since 1983, John Carlin has delivered the day's news to viewers in Southwest Virginia.

A lot has changed professionally over time -- technology, co-anchors and studios.

But in the past few years, things have changed personally for Carlin. 

“In 2015, I came to work one day and it felt like my socks were balled up underneath my feet in my shoe, so I pulled my shoe off and looked and to my surprise, they weren't,” said Carlin. 

Slowly, the numbness started creeping up both legs.

After testing, doctors would soon discover Carlin had a mass growing on his spinal cord.

In early 2016, after a difficult spinal biopsy, doctors determined that mass was part of a disease called sarcoidosis. 

“By then, the numbness had crept all the way up my body, basically from my chest to my feet,” Carlin said. 

The man who ran the Boston Marathon twice could now barely run across the street. 

It was a humbling reality for this outdoor enthusiast. 

“I always thought I would be the guy who was still out there doing it when I was 80. I mean, I always thought that that would be me. I've never had a health issue ever, you know, a significant one. I was the guy that just, it always came easy. And I was always healthy and I always had energy and now I'm not that guy.”

Facing more and more uncertainty surrounding his mobility, Carlin turned to the Cleveland Clinic for treatment. 

“Sarcoidosis is a multi-system disease,” said Dr. Manuel Ribeiro, a sarcoidosis specialist at the Cleveland Clinic. 

Ribeiro is forming Carlin's treatment plan. 

“Sarcoidosis of the spine is very rare. Less than 5% of patients will have sarcoidosis of the spine,” Ribeiro said.    

What makes Carlin's location so problematic is the masses on the spinal cord can affect motor function of the arms and legs, even causing stroke-like symptoms. 

“I've had two neurologists tell me they can't believe I'm walking after looking at my MRIs,” said Carlin.

“His symptoms were not as bad as what I expected from the imaging,” said Ribeiro. 

Right now, Ribeiro's plan of attack is prednisone and chemotherapy -- both of which have visible side effects.

“Viewers have been very kind. They've been contacting me through Facebook, they've been emailing me, they're genuinely concerned. They can see by watching me on the news that I'm not my normal self. I don't look the same. This moon face is what they call it from prednisone, it makes my face so tight I can't even smile naturally,” Carlin said. 

While he's facing physical differences Carlin has still been able to load up the bike and hit the road. 

“The great thing is I can still ride my bike for whatever reason while running feels too awkward, hiking if it's really steep feels too difficult, when I get on my bike I can still do what I used to do, so that's like my normal.”

When asked what the hardest part has been Carlin said, “The hardest part for me is that I've always been super energetic.”

Not until the end of 2019 will he learn if he's made progress shrinking the mass on his spine. 

“I'm fortunate that I have the best doctors that I can have. I'm fortunate that I can still do what I can do,” said Carlin.

For now, he'll continue to do what he loves.

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