ELMIRA, NY (WETM)- For 5 years now, Erica Stein has been battling a rare and debilitating disease known as Complex Regional Pain Syndrome (CRPS).
CRPS is a chronic pain that affects limbs after a surgery, stroke or heart attack.
It has fewer than 200,000 cases per year in the US and is more common in women than men.
It can sometimes take a decade before diagnosing someone with CRPS as there is a wide range of symptoms.
Some symptoms include: sensitivity to heat or cold, swelling, changes in skin temperature, hair and nail changes, and more.
Erica Stein had been living in Colorado for 15 years working as a vet tech.
After an skiing accident, she had to undergo quite a few knee surgeries, the last two being intense.
After a month of rehab and seeing no results, she had to move back to Elmira in 2017 to be around family to get some help.
Three months after being home she was diagnosed with CRPS, and it began to spread quickly.
“If I choose to take a shower that day, that’s it. If I choose to go to PT, that’s it. If I choose to go to the pool, that’s it. I don’t get to do a full day of activity,” says Stein.
The best way for Stein to describe the pain she deals with 24/7 is imagine being outside in -5 degree weather and then going inside to a warmer temperature, that burning and tingling sensation you feel as your body warms up is how her body feels all the time.
“I wake up every single day with frostbitten legs and I’m constantly using my hands to rub out my feet,” says Stein.
This past July she started to experience seizures, which Stein says can be common with CRPS.
However, she was getting to the point where she couldn’t deal with the pain anymore.
There is a Spero Clinic in Arkansas that Stein’s parents surprised her with as a Christmas gift.
It’s a 14 week minimum treatment program with a remission rate of 84.5%.
Stein says her parents have been amazing through this, doing just about everything for her.
“They do my laundry, take out my garbage, my recycling, take care of my house, take care of my animals. my mom helps me shower sometimes because I cant always do it on my own,” says Stein.
She adds for someone that used to love being independent, moving back home and getting help was a challenge.
Stein knows she may never be able to go back to the free-spirited, adventurous girl she once was, but she wants a chance to live again, and she believes the Spero Clinic can do just that.
Not everything is covered by insurance, so her family put together a benefit to help raise some extra funds.
It is taking place May 22nd, from 1 to 5 pm at the Elmira Correctional Facility Clubhouse on Upper Hoffman Street.
There will be music, food, raffles, silent auction, and more.
Kids under 12 get in for free otherwise its $10 at the door.
If you cannot attend the benefit, there are other ways to donate:
For questions, you can call Erica’s father, Bob @ (607) 259-0205.