Empire’s Elsen is looking for a helping handThe weather plays a big role in how Jess Elsen lives her life. If the day is cold and damp, doing much more than getting out of bed can be a challenge. If she pushes herself too hard on the wrong day, she might end up in a lot of pain and stuck at home for days at a time.
By: Nathan Hansen, The Farmington Independent
The weather plays a big role in how Jess Elsen lives her life. If the day is cold and damp, doing much more than getting out of bed can be a challenge. If she pushes herself too hard on the wrong day, she might end up in a lot of pain and stuck at home for days at a time.
It all sounds like the condition of someone much older than Elsen’s 23 years.
“My mom says it’s like living with an 80-year-old,” Elsen said.
Elsen was 16 when she was diagnosed with something called Ehlers-Danlos Syndrome, a genetic defect in the body’s collagen.
The diagnosis came after Elsen went to the doctor because of knee pain. When the doctor saw she could bend her thumbs back to touch her arm he sent her to see a geneticist. Double-jointedness is one sign of Ehlers-Danlos.
The diagnosis came quickly after that appointment, an explanation for what had been years of off-and-on pain.
The pain has gotten steadily worse since then. Collagen is what holds the human body together, and Elsen’s body is coming apart. Her joints pop out of place. She’s had surgery on both legs. She has arthritis in most of her joints.
“I don’t really leave my house anymore, because I can walk for a while, but if I do I end up in a lot of pain,” Elsen said. “After 10 minutes or so I’m just exhausted.”
After a couple of blocks, her heels start to feel like they’re going to rub through her feet.
It’s all meant a big disruption to the way Elsen lives. Because she can’t travel far, she still lives in her parents’ Empire Township home. She can’t lift more than about 10 pounds unless it’s positioned just so. She can’t do much cleaning, can’t go grocery shopping or out to concerts with her friends.
“I used to ride my bike around town,” she said. “I was going to the U of M to become a veterinarian. That had to stop because my grades got so low when my health problems got in the way.”
Elsen is taking a few classes at Inver Hills Community College, but she spends most of her time at home doing art projects and taking care of her dogs.
She’d like to change that, but getting out of the house more will require a wheelchair. Because she has trouble lifting a lot of weight, that wheelchair has to be very light, and those cost a lot. Insurance won’t cover the cost because Elsen doesn’t need the wheelchair full time.
So, Elsen has turned to the Internet. She started sending requests out on Twitter, asking people to share her story. A few have, including local DJ Ton E. Fly and Andrew Zimmern, who hosts the Food Network show Bizarre Foods. A retweet by a wheelchair basketball player also drove some people to the site Elsen has set up at thepoint.com, a service that allows users to set up campaigns to attract volunteers or donations.
As of Monday, Elsen had raised almost $250 of the $2,500 she needs to buy the wheelchair.
“It would allow me to get out to go shopping with my friends,” she said. “To go to the State Fair I’d have to use a wheelchair. Last summer I went and I had to rent one and it wasn’t very good.”
Elsen hopes getting the wheelchair will help her live a more normal life.
“I’d love to get out of my parents’ house,” she said. “Nobody wants to live at home when they’re 23.”