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It took 16 years after Ethan Nelsons arthritis diagnosis until he met someone who shared his condition.

There is definitely this generation where if you get diagnosed, you are alone, Nelson said. You dont have anyone.

Nelson, now 22 years old and a junior at Brigham Young University, was diagnosed with systemic juvenile idiopathic arthritis when he was 4 years old. He spent the last two years volunteering for arthritis-related causes and helping to build a network of young adults who share the same condition.

He was honored Dec. 7 in Salt Lake City at the Jingle Bell Run, a 5K that benefits the Arthritis Foundation.

The run honored six people, which also included Kendall Pogue, who is also a BYU student, and Spencer Hood, who, along with Nelson, had tried to connect young adults with arthritis.

Hood first connected Nelson with the Jingle Bell Run two years ago. This year, Nelson led a team and raised $530 of his groups $810 total.

He is a really great guy, said Debbie Jordan, the executive director of the Arthritis Foundation of Utah. You have to think about what it is like for a college kid to get up at 4 a.m. in the morning and help us out.

Jordan said the honorees are volunteers who have done more than the average for the foundation. She said theres typically about 40 BYU students who come to help out at the run.

The young adult volunteers, she said, show children with arthritis that they can still achieve their goals.

I think it gives them a lot of hope, Jordan said.

Its not the first time Nelson has been involved with raising awareness and funding for arthritis. He was the literal poster boy for the National Arthritis Foundation when he was about 5 years old, showing the effects that his treatment at the time, the steroid prednisone, has on the body.

Since then, hes had two hip replacements one when he was 13, the other at 16 and had surgery on his ankle.

He was on the tail end of a generation that exclusively used prednisone, which has been mostly replaced with biologic treatments and IV infusions for young patients. The last two years have been rough as he tried to find a medicine his body responded well to. After trying five different treatments, hes doing well again.

I feel like 100% normal, Nelson said. I can walk without pain.

Hes volunteered at Camp Kids Out to Defeat Arthritis, also known as Camp KODA. While there, he advocates for campers to become independent in order to prevent flare ups and joint damage.

I know these kids very personally now and I dont want my mistakes to rub off on them in the future, Nelson said. So it is like, dont let your arthritis hold you back, dont take advantage of it and stay on top of things.

The Arthritis Foundation estimates that one in four adults have arthritis, which includes 400,000 adults and 3,000 children in Utah.

Nelson said that while someone in their 20s is just as likely to be diagnosed as someone who is 60, young adults often dont talk about having arthritis.

It is so much easier to conceal, to hide, than cancer, and so I feel like people have the opportunity to hide it and so they do from others because they dont want to feel like the odd one out, he said.

While he feels the Arthritis Foundation does well with reaching young children and older adults, Nelson said young adults can be left out. He and Hood are trying to find more young adults who have arthritis for their group, Utah YA Champions. Nelson is also working to create a student association at BYU for students with arthritis.

More:
BYU student connecting 'lost generation' honored by Arthritis Foundation - Daily Herald

This entry was posted on December 23, 2019 at 5:45 pm and is filed under Arthritis. You can follow any responses to this entry through the RSS 2.0 feed. Both comments and pings are currently closed. |