Middle Tenn. man living with rare genetic disease wants to help others live their best life

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NASHVILLE, Tenn. (WKRN) – Imagine living with a rare, incurable genetic disease. People notice something is wrong with you, but don’t know what it is.

A Middle Tennessee man with Hereditary Spastic Paraplegia (HSP) wants to make you more aware of what he has.

Jim Sheorn lives with HSP every day and he is committed to helping others with it live their best life.

HSP is a neurological disease.

“It’s estimated in the U.S. there are about 20,000 people with HSP and 5,000 that have PLS – Primary Lateral Sclerosis,” explained Sheorn.

Sheorn said one of the first things he noticed was his gait.

“At first I noticed I had a slower gait than most of my friends,” he explained. “I would trip up stairs now and then. Stuff like that.”

He said progressive weakness and stiffness in his legs would eventually take away mobility.

“I started walking awkwardly. Then I moved into a cane, and then a walker at times,” he said.

Now, from a wheelchair, Sheorn uses social media to connect with others living with HSP.

“We have about 3,000 people on our Facebook page and about 18,000 people in our database,” he said.

Sheorn, who is part of the SP Foundation, said the nonprofit’s primary focus is to raise money for medical research.

“We are looking for a Michael J. Fox that may have HSP or PLS. Michael J. Fox Foundations raised thousands, not thousands, but millions and millions of dollars for Parkinson’s research,” he said.

In the meantime, those affected by the disease are doing their part to make a difference, too.

“This is the little girl that did the hotdog fundraiser. She’s seven-years-old and she raised $1,300,” Sheorn said.

This week is the first annual HSP Awareness Week. Sheorn hopes it reaches out to people struggling with HSP and PLS and it lets people know that even though these diseases are not well known, they make life a daily challenge for people with them and they need our support.

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