Genetic disease kills 5 men in family – EDS

WYOMING, Mich. (WOOD) – Darlene Yasick’s family has known heartache and loss but it’s a well of hope, deep faith and unending love that has gotten them through the toughest of times.

“If you don’t have hope, then there is nothing,” said Yasick.

Her family suffered its first loss in 1989.

“My husband passed away in 1989. At the time that he died, we didn’t know what the cause was. He was 48 years old.”

But it wasn’t until years later they would find that it was something called Ehlers-Danlos Syndrome — a deadly genetic disease — that killed him.

Since Yasick’s husband Gene died, she has lost three sons and a grandson to EDS.

Yasick describes it as a “nightmare and you can’t wake up from up it.”

According to the Ehlers-Danlos National Foundation, those that have EDS “have a defect in their connective tissue, the tissue that provides support to many body parts such as the skin, muscles and ligaments. The fragile skin and unstable joints found in EDS are the result of faulty collagen. Collagen is a protein, which acts as a ‘glue’ in the body, adding strength and elasticity to connective tissue.”

That means, essentially, that EDS weakens the bonds that hold organs, vessels and arteries together.

There are six different kinds of EDS. All five of Yasick’s family members who died had the Vascular Type — the most serious form, according to the Ehlers-Danlos Syndrome Network.

The Vascular Type of EDS can lead to the sudden rupturing of arteries or organs as the result of even minor trauma.

“There is no treatment. There is no therapy. Right now, there is nothing if you have it you have it,” Yasick said.

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