Group is taking steps to make a difference in fight against EDS

Six year old Stevie already faces many of the devastating side effects of EDS.

Six year old Stevie already faces many of the devastating side effects of EDS.

By Cindy M. Cranmer

A Rockford woman is doing her part to help work towards education, treatment options and, hopefully, a cure for the disease that ended her stepfather’s life; a disease her half brother, six-year-old Stevie, is now facing. Tom Yasick died in 2010 at the age of 42 from the vascular type of EDS, regarded as the most serious form of the disease. His father, Gene Yasick, and brothers Tom and Mike were also victims of EDS.

Few have heard of Ehlers-Danlos Syndrome (EDS), but May is EDS Awareness Month. Awareness is what led Clara Klap and husband, Aaron, to start the group “Steps for Stevie” in 2011. The group, started with three people and now boasting 40 plus members, will participate in the Fifth Third Riverbank Run on Saturday, May 11 to help raise funds for the Ehlers-Danlos National Foundation. Klap says the only cost to participate is the Riverbank Run entry fee and $15 for the Steps for Stevie 2013 t-shirt. Running or not, anyone can buy the t-shirt and help the cause by contacting Klap at claraklap@yahoo.com.

“Help this six-year-old little boy who has already known sadness beyond his years and who faces a lifetime of hardship along with many other families throughout the country,” says Klap. “Darlene Yasick has lost a husband and three sons to this nightmare of a disease. Now, she sees her grandson battling it. Helping to support research and networking for people with EDS is one small step toward finding a cure.”

Individuals with EDS have a defect in the connective tissue that provides support to body parts such as the skin, muscles and ligaments. Faulty collagen causes the fragile skin and unstable joints that are found in EDS. There are six primary types of EDS and while there are some commonalities between types, each is a distinct disorder. According to the Ehlers-Danlos National Foundation, types “run true” in each family meaning that an individual with one type will not have a child with a different type.

Life expectancy can be shortened with the vascular type of EDS due to the possibility of organ and vessel rupture, but life expectancy is usually not affected in other types.

Klap said someone with EDS does not look or act sick, but they are. “Connective tissue is everywhere in your body holding every piece of your body together,” she said.

“Many people do not know they have the disorder until it is too late as it is often misdiagnosed. Even if EDS is properly diagnosed, there is no treatment and no cure.”

Klap said many doctors also are unfamiliar with the disease, so dealing with sudden complications is a challenge. “The importance is knowledge and education to the medical professionals and the community about this disease,” she said.

About one in four people with vascular type EDS develop a significant health problem by the age of 20, more than 80 percent develop complications by the age of 40 and average life expectancy is 48.

“It breaks my heart to say that my little brother, Stephen, age six, has been diagnosed with the disease. He will face a lifetime of hardships,” Klap said. “Everyday normal activities could turn into a fatal situation. Sports, amusement park rides, anything that could jar him is dangerous.”

For more information on EDS, visit the Ehlers-Danlos National Foundation website at www.ednf.org.

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