North Myrtle Beach man to be featured in national awareness campaign for rare disorder

HORRY COUNTY, S.C. (WBTW) — A North Myrtle Beach man with a rare autoimmune disorder will be featured in a national awareness campaign.

After many years of visiting multiple doctors and getting no answers, Jack Elliott was diagnosed in 2009 with Chronic Inflammatory Demyelinating Polyneuropathy, also known as CIDP. It causes weakness mainly in the arms and legs.

He spent nearly 20 years trying to figure out why he was experiencing numbness in his feet and eventually struggling to walk. The fourth doctor he spoke to finally told him he had a disorder that only one in 3 million people struggle with.

“I can still do a lot of things now, it’s not so terrible,” Elliott said.

Elliott was 43 years old when he started to develop his first symptoms. It wasn’t until he was 60 that he found out what he had.

Elliott said, in that moment, it was exciting to finally get an answer.

“I mean, it’s terrible if somebody tells you, you have something that you don’t have a clue about and you’re getting worse,” he said. “But it was almost euphoric. Somebody after 17 years had finally said, you’ve got something.”

He spent many years without resources or knowing another person who had CIDP. He said it was a lonely feeling. However, that changed after his diagnosis.

Recently, Elliott was asked to participate in a national campaign called “Shining Through CIDP” and to share his story. The campaign aims to provide resources and assistance to people who struggle with the ultra-rare disorder.

Elliott said if he had a resource like this when he was diagnosed, he thinks he would’ve been happier.

“You know not curious to why do I feel like this and does everybody feel like this and in reality, they don’t,” Elliott said. “It’s a very strange disease. It has many different parts to it.”

Elliott said the campaign will help educate many about what it is and that there is help for those who have the disease.

Overall, Elliott said he’s excited to be a resource for others. It’s something he wishes he would have had for the past 31 years.

“Helping folks with it, caregivers, and folks that work with them or that just want to know about it,” Elliott said.

The campaign, which is planned to launch in June, will feature a PBS documentary, TV commercials and a reality mini-series.

Click here to get more information about the disease.

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Adrianna Lawrence is a multimedia journalist at News13. Adrianna is originally from Virginia Beach, Virginia, and joined the News13 team in June 2023 after graduating from Virginia Commonwealth University in May 2023. Keep up with Adrianna on Instagram, Facebook , and X, formerly Twitter . You can also read more of her work, here .

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