17 year-old triathlete travels 3,000 miles for rare disease awareness

The National Institute of Health said in Indiana alone 110 people have been diagnosed with primary periodic paralysis. Many people haven't heard of it and just like other rare diseases a lot of people don't even know they have it until they are diagnosed. A 17 year old from Hawaii came all the way to Fort Wayne to spread awareness about this disease by doing what he loves- riding his bike.

Posted: Jul. 30, 2018 7:08 PM
Updated: Jul. 31, 2018 9:09 AM

FORT WAYNE, Ind. (WFFT)- This summer marks a 3,000 mile solo cycling journey across several states to advocate for people with rare diseases.

17 year old Gabriel Low is making this trip with the inspiration of his mother pushing him. They both have a rare disease called primary periodic paralysis.

"Periodic paralysis is a genetic condition that can cause attacks of weakness and paralysis in your muscles and it's really rare. There's about 5,000 who are diagnosed in the U.S,"Low explained.

Because of early diagnosis, Gabriel's been OK, but he knows there are many people out there who aren't.

"I had an awakening moment when I had a paralysis attack in March and I paralyzed. It was during a triathlon race actually, and I finished the triathlon and I paralyzed totally,"Low said.

That wake up call started this journey.

"I've been so lucky and blessed from my diagnosis, and given all these opportunities. Now I want to use those opportunities like my ability to ride a bike to go help others, and the best way to do that was ride across the country and talk to people along the way and spread awareness because awareness is what's really important,"he added.

One of the biggest challenges for people with PPP is having a correct diagnosis. A confirmed diagnosis can take as long as 20 years.

Rare diseases affect about 30 million people, and only 5% of diseases have treatments.

His trip will end in Cleveland, Ohio where he will compete in the USA Triathlon Age Group Nationals.

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