Drexel senior Emma Straub, who is living with scleroderma and planning an upcoming fundraiser at City Tap House on Feb. 7. Credit: Charles Mostoller/Metro
Living with any illness can be tough, but the autoimmune disorder scleroderma - which is little known despite the fact that about 300,000 Americans suffer from it - carries its own unique challenges.
For Drexel senior Emma Straub, 22, finding out that she had scleroderma was tough to process.
"I’d never even heard of it before I was diagnosed with it myself," Straub said. "As soon as I found out, I was like, 'Thank God, it has a name.' I just took my meds, and didn’t really deal with the fact that I’m going to have it for the rest of my life."
But now Straub has organized a fundraiser and awareness event, on Feb. 7 at City Tap House.
"I realized how many people don’t know about it," Straub said of what drove her to organize the fundraiser, which will benefit the Delaware Valley Chapter of The Scleroderma Foundation, and will count as her senior project at Drexel.
Scleroderma is an autoimmune disease that causes the gradual hardening of tissues and blood vessels. Its cause is unknown and there is no known cure. The disease can affect organ function and cause severe complications. Actor Bob Saget's sister died from the disease. But it is still relatively little known to non-specialists.
"Trying to get donations for the event was somewhat of a struggle," Straub said. "People are much more apt to donate and support things they’ve heard about."
In Straub's case, the lack of widespread knowledge of scleroderma, even among medical professionals, meant just getting diagnosed was a battle.
Straub had stomach problems and other issues for years before her scleroderma symptoms first became visible - a bald patch on the back of her head and a bad rash on her leg - in October 2012.
"I was just very sick. I had a fever of 104 for, like, a week. It was horrible. I was losing my hair," Straub said. "I was just like, 'I am clearly very sick, what is happening to me?'"
Doctors first told Straub that she had a fungal infection and prescribed anti-fungal medication, which did nothing to improve her symptoms. Two months later that medication was stopped and weeks of blood tests were run, but no new diagnosis came.
After several months of medical limbo, Straub wound up at a rheumatologist, who merely recommended vitamins. Straub then sought a second opinion, and it was that second rheumatologist who diagnosed her with scleroderma.
Shockingly, the doctor told Straub that she had been testing positive for scleroderma in blood tests throughout her life. But none of her doctors had been trained to recognize it.
"I’m going to have to deal with being sick for the rest of my life, which is a really tough thing to figure out at age 21," Straub said. "Just everything that can happen from it, when you read people's stories of the crazy hardships they’ve had, it's terrifying to think about."
Straub, originally from Westchester County, N.Y., has had to make many adjustments to her personal life. She is more focused now on staying healthy through exercise and yoga, and she has to curb herself from trying to do too much, like simultaneously holding a full-time job and going to school full-time, as she used to do.
Going from studying all night to sometimes having to forgo social activities "was a huge adjustment," Straub said. "But it's not the worst thing in the world."
With the help of local support groups, family and friends, Straub is doing her best to maintain a positive outlook, and channeling her energy into events like the upcoming fundraiser that will help others.
"It's really inspiring to try and really make every day count," Straub said of life since her diagnosis.
"There were days I could literally not get out of bed by myself. I rarely have those days now."Straub's fundraiser, Tap into a Cure, will be held on Friday, Feb. 7, from 8 to 10 p.m. at City Tap House, 3925 Walnut St. A $5 entrance fee comes with a free Victory beer. ____________________