Chance diagnosis gives family hope

Wendy Kalivoda considers herself lucky to be able to watch her nephew London grow up every day.

special to the Chronicle

London Kalivoda

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In his eyes, she said, she sees her sister Kimberlee, who died 13 years ago giving birth to London. Doctors told Kalivoda and her family that lupus caused Kimberlee’s sudden death.

Years later, Kalivoda said she started to notice that London was suffering from the same symptoms her sister had dealt with all her life — easy tearing of the skin, light rashes on his cheeks and thighs, sensitivity to the sun and a mysterious rash on his neck, which looked exactly like the one her sister had on her arms. Kalivoda said she had London repeatedly tested for lupus and the doctors said he probably wouldn’t test positive until he was much older. Unconvinced by the doctors’ diagnosis, Kalivoda started doing her own research on the Internet and came across a picture of person with elastosis perforans serpiginosa (EPS). The rings the person had on their skin looked just like the ones on London’s neck.

“So I knew I was on the right track,” Kalivoda said.

She began reading about EPS and learned the disease was associated with Ehlers-Danlos Syndrome type IV (EDS). EDS is a genetic connective tissue syndrome that can affect people’s joints, skin and internal organs. Common characteristics of EDS include easy bruising, loose joints, skin that stretches easily and weakness of tissues. People with EDS have abnormal proteins that make the collagen, which essentially is the “glue” that holds tissues together, frail.

She had London tested for EDS and on her sister’s birthday, Kalivoda said she learned he tested positive for it.

London suffers from the most dangerous form of EDS, which affects 1 in 200,000 people. In his case, his internal organs and blood vessels have a high susceptibility to rupture. The disease makes people’s organs so fragile that Lynn Sanders, founder of the Ehlers-Danlos Syndrome Network C.A.R.E.S Inc., said a child died from doing a cannonball into a swimming pool because the pressure caused the child’s aorta to burst. Sanders also has EDS.

“They have to be careful,” Sanders said. “We’re all like tissue paper.”

Sanders began her foundation three years ago after a close friend of hers died from EDS. The typical life expectancy for someone with the disease is 40 years.

She said she felt there wasn’t enough research or awareness about EDS and felt it was necessary to have doctors pay attention to this very real syndrome. EDS isn’t as rare as believed she said, but it is underdiagnosed and overlooked.

For the past three months, Kalivoda said it has been her mission to put together a fundraiser for EDS research. A doctor at John Hopkins Hospital has taken interest in wanting to grow mice with EDS so they can be studied. Sanders said people hope the research could yield some type of treatment for the disease and help increase the life expectancy. The project needs $75,000 and only $36,000 has been raised through Sanders’ Web site.

On Sept. 26 starting at 10 a.m. at Love Motorsports located in Homosassa on U.S. 19, there will be a bike run to raise the money needed for the research project. There will be first, second and third place awards for Best of Show. In addition to the run, there will also be plenty of activities to choose from, including a waterslide, bounce house, games, snow cones, popcorn, food/drinks and a classic car show. Sanders and her foundation’s national spokesman, pro wrestling announcer Shannon Rose, will also attend.

There will also be live entertainment, drawings, baked goods for sale, a hairstylist, a massage therapist and maybe even a psychic for the event.

All proceeds, minus the cost of food, will go to the EDS Research Fund. Sanders said this would be the first major fundraiser for the research and hopes it will be a success.

“It’s pretty exciting,” Sanders said.

Kalivoda said London starts seventh grade soon, and since being diagnosed with EDS, he has had to give up many activities like playing sports and skateboarding.

“He had to alter his lifestyle,” she said.

But Kalivoda said she is relieved to finally have an answer not just for London, but to know also why her sister lost her life at the early age of 26. Now, she said it is her goal to raise money to help London and others suffering from EDS live a longer life than her sister did. She wants him to be able to have as normal of a life as possible.

“I just want to find a treatment,” she said, “because I don’t want to go through (losing a loved one) again.”

WHEN: 10 a.m., Sept. 26.

WHERE: 2081 South Suncoast Blvd.ee^(U.S. 19), Homosassa.

CONTACT: Call Wendy or Kurt at 563-5363, Richard at 795-7996 or visit http://dyingtolive.info.

MORE INFO: To learn more about Ehlers-Danlos Syndrome and the Ehlers-Danlos Syndrome Network C.A.R.E.S. Inc., visit www.ehlersdanlosnetwork.org.

Contact Shemir Wiles at 564-2924 or swiles@chronicleonline.com.