Tiffany Starts Ehlers-Danlos Organization in Canada

This Canadian woman fought back after discovering she has Ehlers-Danlos Syndrome.

Tiffany“Endless determination and strength are words that convey character.

Tattooed on Tiffany Skladan’s wrist, they express that and much more.

The Milton woman was diagnosed with Ehlers-Danlos Syndrome (EDS) four years ago. The little-known inherited connective tissue disorder impacted her digestive system, causing gastroesophageal reflux disease (GERD).

It affected her so severely, the acidity in her esophagus almost matched that in her stomach, she said, noting the sphincter muscle that prevents stomach acid from regurgitating back into her esophagus wasn’t functioning properly because of EDS.

Now on a “cocktail of medications to control it,” Skladan, 31, said she learned everything she could about EDS and discovered there’s wasn’t much information to be found.

EDS — the first letters of the words she eventually had tattooed — was also the cause of hyper-mobility that she was diagnosed with in 2006.

“The letters ‘E’ ‘D’ and ‘S’ — because that’s (endless determination and strength) what you need to fight,” she explained, noting that May is EDS awareness month.

The collagen in the bodies of people with EDS is faulty. Collagen is like the glue that holds your body together and gives strength to support body structures. Different body systems will be affected depending on where the collagen doesn’t provide strength.

Skladan said in her case, her shoulders, elbows and wrists are among areas that are impacted. At any time, and with a movement as simple as a flick of your arm — those joints can dislocate, causing intense pain and requiring immediate medical help.

“You almost become scared of moving,” she said. “I tried bracing joints, but that caused my muscles to tighten.”

It forced her to give up her job as a pastry chef and later as a regular chef, since lifting heavy items or standing on her feet for lengthy hours became nearly impossible. Her muscles tighten and she suffers joint injuries. Her body is fragile, bruises easily and can sustain injury from minor trauma.

In Skladan’s case it also causes increased skin elasticity. For instance, if she required stitches, they could easily tear out because her skin is too weak to contain them.

With no cure for the genetic disorder, Skladan said she manages her pain and discomfort with a variety of treatments including massage and chiropractic.

EDS, which can be life-threatening, especially when it affects internal organs such as the kidneys, is painful and emotionally draining, added Skladan, who now works in food safety. She said it can become very frustrating and depressing and that’s why she founded EDS Canada, a non-profit support group, and online organization www.ehlers-danlossyndromecanada.org.

“It can leave you feeling lost and alone and that’s depressing,” she said. “You can’t plan and organize.

“Each day I get up, if it turns out not to be too bad, I’m grateful.”

Through the website, she is able to reach out to the thousands of others who might otherwise be facing the syndrome on their own. It’s rare – there are six types of EDS – with the most common being hypermobile, affecting anywhere between 1 in 5,000 to 1 in 15,000, she said, citing 400 people across Canada who are members of the national non-profit group, www.EDNF.org.

Because it’s rare, she said few people understand the disease and people can go for years without discovering what is actually causing their medical problems and chronic pain.

She attends regular support group meetings in Etobicoke where together, EDS sufferers can share knowledge, advocate for help and support for each other and their families. There are also support groups in Barrie and Simcoe County and London.

“I wanted to educate and do something positive,” she said.

To further spread awareness, Skladan, asked the Town of Milton to proclaim May EDS-awareness month.

In addition, she asked the city of Niagara Falls if they could do something to show support and they agreed to have a red and white light show on the falls May 1.

Skladan said the genetics department at Mount Sinai Hospital in Toronto has been a great resource for her, especially under the guidance of Dr. Allan Gordon. She said he sees about three undiagnosed cases each week.

Since it is a hereditary disease, after her diagnosis, her mom and her sister and brother were all diagnosed with milder forms of EDS. In addition, an aunt on her mother’s side lost a kidney due to EDS.”

“I just wanted to be able to reach out to more people and provide information and support,” she said. “There’s people out there looking for a diagnosis, feeling like a crazy person with these symptoms and no answers.”

Tiffany founded EDS Canada, a non-profit support group and online organization www.ehlers-danlossyndromecanada.org to help others with EDS. 

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