One Teen’s Cross-Country Crusade to Raise Awareness for Rare Diseases
Advocacy Gabriel Low was diagnosed with hypokalemic periodic paralysis at a young age, but it took his mother decades to receive her own diagnosis. He decided to bike 3,000 miles to raise money and awareness for other diseases that are difficult to diagnose.
Gabriel Low won’t let a rare disease stop him.
The phrase “rare diseases” is misleading; collectively about 30 million people suffer from “rare” diseases. That’s hardly rare, but because they are uncommon, they are difficult to diagnose, and many people spend years or decades seeking answers.
Such was the experience for Emily Low, the mother of 17-year old triathlete, Gabriel Low.
“She was a champion mountain biker,” Gabriel Low says. “But she would get on the bus after a competition and lie down and not be able to get back up.”
She was finally diagnosed with hypokalemic periodic paralysis when she was 29 years old, more than two decades after she experienced her first attack.
Primary periodic paralysis
“Get diagnosed early, get involved with the community and don’t feel like a victim. Being a victim just holds you back.”
Primary periodic paralysis (PPP) refers to a range of rare, inherited neuromuscular disorders that mainly affect skeletal muscles. This can cause recurrent episodes of muscle weakness or temporary paralysis. Most attacks range from 30 minutes to several hours, but some attacks can last for days. The most common forms are hyperkalemic and hypokalemic periodic paralysis. As people with PPP get older, many develop permanent muscle weakness, which may be irreversible.
Because his mother had finally been diagnosed, she was able to recognize the symptoms in Gabe, and he, too, was diagnosed at just six years old.
“Early diagnosis is a real advantage,” Low says. “I’ve never experienced what my mother went through.”
Low decided that he wanted to do something to raise awareness about early diagnosis of PPP and rare diseases in general. “I don’t want people to live like my mother did,” he says.
Ride for rare diseases
Low’s idea was powerful: He rode his bike 3,000 miles from Seattle to Cleveland to start a conversation and spread a message of hope.
“I kind of found my identity,” he says. “This ride has deepened my sense of who I am.”
It has also attracted a lot of support. Strongbridge Biopharma®, a company focused on treatments for rare diseases, was inspired by Gabriel’s story and decided to sponsor Low’s ride.
“We have the same mission,” Low says. Because of Strongbridge’s sponsorship, Low can take the money he raised on his GoFundMe Page and donate it to the Periodic Paralysis Association.
Low’s advice for people dealing with rare diseases is simple: “Get diagnosed early, get involved with the community and don’t feel like a victim. Being a victim just holds you back.”