Eric’s Journey with Still’s Disease & HLH

Eric’s Journey with Still’s Disease & HLH

Four months after Eric married his wife, Amanda, he expected wedded bliss, not an extended hospital visit. Just ten days after being admitted to the Emergency Room for unknown causes, he was rushed to Temple University Hospital in Philadelphia where he fought for his life, medically paralyzed, sedated, and on ventilator support for two months. While asleep, an ECMO machine – similar to dialysis for the lungs – kept Eric alive while his doctors searched for answers. He’s currently the longest surviving person of ECMO support who did not receive a lung transplant at Temple University.

After he woke up from his coma, he was diagnosed with two rare diseases; Still’s Disease, a severe form of arthritis, and HLH (Hemophagocytic Lymphohistiocytosis), a blood disease that affects the immune system which often results in bone marrow transplants.

Never having been sick in his life, Eric was more than concerned. He was told that after waking up from his coma he only had a 5% chance of survival and because he had been immobile for months, he had no muscle mass and therefore could not walk. Even worse, because he had to have his trachea removed, he was unable to talk as well.

“I was borderline suicidal,” Eric said. “The only thing that got me through was knowing that if I could help one person not experience what I had, it would be worth it.”

Finally, after 99 days in the hospital, he was able to return home. However, ever since being diagnosed his life has changed dramatically. He currently takes high doses of steroids and chemotherapy-grade medications to keep his health on track. As an avid outdoorsman and adventurer before he fell ill, Eric has had to cut down on many of his hobbies. And one of the hardest aspects of dealing with his condition is the extreme price of medication.

“It’s [hard] looking at how much money I spend on medicine and medical care at the end of the year,” Eric confessed. “It’s like a vacation to an island beach that gets thrown away. I’m constantly exhausted and work is brutal.”

However, Eric has kept up with his positive thinking and he and Amanda have remained even started a website, www.ericsjourney.org, that chronicles his diagnosis and how he’s battling his diseases, all to raise awareness for Still’s Disease and HLH. Video journals, personal goals, and Eric’s detailed story are just some of the features on the site. The website also collects donations that don’t go to Eric personally, but that instead go to sponsor the diseases he suffers from so that a cure can be found.

There are different coping mechanisms Eric uses daily, but the best he says, is to make a goal to accomplish a very small project. Knowing it will only take him five minutes to complete, he says he tricks himself into staying up and moving around for a longer period of time, so he gets the exercise and movement without dreading having to do it beforehand.

Ever the optimist, Eric is excited to become active again. In an effort to increase his physical activity little by little and to inspire otheres, he will be joining the Racing For A Cure team. He’s excited to get back into cycling and one day maybe even compete and raise money for the foundation’s arthritis research projects underway.

If you’re interested in sharing your arthritis-related story please contact KYLE!

ANRF
Article Author
Arthritis National Research Foundation
arthritisresearch@curearthritis.org

The Arthritis National Research Foundation's mission is to provide initial research funding to brilliant, investigative scientists with new ideas to cure arthritis and related autoimmune diseases. Writing articles about the patients affected and the science being done to find a cure shows why we need to come together to #CureArthritis!

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