This article can be found published on the Daily Local News‘ website and the Delaware County Daily Times‘ website and featured on EDS Awareness.
It’s a disease so rare that only one out of every 250,000 people will be diagnosed with it.
But for West Chester University senior Emma Yasick, she is now that one — and one of seven members of her family to be diagnosed with the rare, incurable disease known as Vascular Ehlers-Danlos Syndrome (VEDS).
“It’s frustrating to say the least,” she said. “It’s something I would never wish upon anybody to have to go through this.”
Yasick has already lost two of her uncles, her grandfather, her father and her brother — all passing away in their 40s, except her brother, who she lost at just 25. Her 7-year-old cousin also has VEDS.
And in September 2014, Yasick herself was diagnosed.
“It’s hard to see what my family has gone through and know that there’s nothing we can do about it,” she said. “Especially for me, it’s just scary at this point. I’m living with this disease that I have no control over. I was told I can take Vitamin C supplements, but other than that, there’s nothing they can do for me.
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“There’s no treatment and nothing that’s going to prevent the end result from happening. That’s really just terrifying. It’s all the more motivation to try to get something in place,” Yasick said.
Along with the help of her significant other, Justin Borreggine, they started the DEFY Foundation — Defeating EDS For the Yasicks — during their senior years at West Chester University.
The purpose of DEFY is to raise awareness and money for research into VEDS specifically, as there are multiple types of Ehlers-Danlos Syndrome.
Vascular is Type IV and is considered the most serious form of Ehlers-Danlos Syndrome.
According to the Ehlers-Danlos National Foundation, Ehlers-Danlos is a genetic defect in the connective tissue, which is the tissue that provides support to your skin, muscles and ligaments.
With VEDS, there is the possibility of an arterial or organ rupture, along with bruising, slow wound healing, muscle tears and joints prone to dislocation.
“Each organization has it’s face,” Borreggine said. “Breast cancer is very prevalent in the country, so a lot of people are going to help that. For a disease that affects one of every 250,000, where do you get a face from that? There is such a love for (the Yasick) family. That’s our face. We can only hope to expand it from there.”
DEFY has quickly grown since its inception in October. Any plans to keep it a small, grassroots organization quickly went out the window once word spread.
“People are donating from all the states,” Borreggine said. “There is no official membership, but there is a Facebook page with 660 likes. To us, that’s impressive.”
The GoFundMe page has also seen a bump, with 58 people donating over $7,000 in the last five months.
“It’s nothing short of humbling,” Yasick said. “It just blows me away how generous people are, how supportive people are and how much people care about my family. It’s crazy for me to talk about the impact that we’ve been able to have.”
And that doesn’t include the money that will be raised April 19 when DEFY holds its first of hopefully many yearly 5Ks.
The 5K will take place in downtown West Chester, starting at Church and Market streets at noon.
Immediately following the 5K, Barnaby’s of America on South High Street will host a Beef & Beer for $15.
And this won’t be the lone 5K for DEFY this year.
“We have a lot of offers to help and to expand,” Yasick said. “Even with the 5K, my family in Texas can’t be here and they’re going to run their own 5K in Texas. My grandma in Michigan is putting on her own 5K. It’s cool that we have different sites.”
All money raised through the 5K, GoFundMe or any other fundraisers which may happen will go directly to Dr. Hal Dietz at the Johns Hopkins University School of Medicine, who Yasick has been in touch with.
“We looked into specifically who is doing the best work and the most work in the research field,” Yasick said. “(Dietz) assured us that Vascular Ehlers is something he thinks about every day and something that frustrates him so much because he just wants to find something to do with it. He said any dollar would absolutely help him.”
Anyone interested in the 5K on April 19 are asked to visit https://www.signup2raceusa.com/ccrs/defy5k/ to register. Walk-on registrations are also accepted. If you would like to donate to the DEFY Foundation, visit http://www.gofundme.com/DEFYEDS.