N.S. woman opens up about living with Ehlers-Danlos Syndrome to bring awareness to disorder

Ehlers-Danlos Syndrome, or EDS, is a connective tissue disorder that often goes undiagnosed.

Dr. Gabrielle Horne, the lead of the Maritime Connective Tissue Clinic at the QEII Health Sciences Centre, says there are 13 or 14 different types of EDS.

“We really don’t know how common it is. I would say it’s not common and it’s not rare. It’s in the uncommon category,” says Horne.

Horne says physicians don’t know how many people have EDS because the condition is not easily diagnosable.

“There are a lot of people who probably have it but don’t realize they do,” says Horne.

Despite years of experiencing dislocated joints as a teen while participating in dance and cheerleading, 31-year-old Nicole Regan wasn’t diagnosed with Ehlers-Danlos Hypermobility Syndrome until she was in her 20s. Horne says this is typical.

The life-long chronic condition makes joints and skin stretchy. Regan says she never knows when a knee or a joint may suddenly dislocate.

“So the glue that holds your body together is not as strong as it could be. Either it’s missing in some parts, it’s faulty,” she says.

“Imagine what it would be like to not have control over your own body. Over your own schedule.”

Every day, she drinks lots of water, but the weight of her 4 lb jug could injure her arm.

“I have to be very careful about lifting it in to my body,” she says.

A simple task like cutting meat could injure her back or increase her heart rate.

“Pumping really hard to get the blood up to your brain so you don’t pass out,” she says.

Ehlers-Danlos symptoms can vary from person to person. In addition to stretchy joints and skin, chronic headaches, dislocations and subluxations, the disorder can also involve organs and organ systems.

"Every patient's journey is unique," Horne says, noting stretchy joints doesn't mean a person definitely has EDS.

"The first step is to get an accurate diagnoses."

Regan has also developed a condition, Postural orthostatic tachycardia syndrome (POTS), which makes standing up for a long period difficult.

Coping with the physical pain is one thing; however, the emotional pain is another. Regan has a degree but can’t work. She’s trying to write a book, but simply typing is tough.

What has helped her cope is sharing her story on social media and connecting with friends like Kimberly Stalker who share her condition.

“With Nic I’m normal,” says Stalker. “We have some different areas that are worse or better or different cause every EDSer has a completely different combination.”

Which is why Regan wants to share her story.

“Most doctors who I see I have to explain my illness to them,” says Regan.

Regan says she’ll continue to work hard to care for herself and raise awareness about her painfully misunderstood condition.