MLA’S family aims to raise awareness
‘I’ll just live a long life in pain, that’s all,’ Nicole Regan says
Nicole Regan has resigned herself to living with pain.
As a young girl, Regan, now 32, gave up dance because she was constantly dislocating her knees in class.
“My first dislocation, I was only a few years old,” said Regan, who grew up in the Bedford area, one of three children of federal and provincial Liberal politicians Geoff and Kelly Regan.
Regan lived with dislocations of several joints, along with subluxations (partial dislocations), dizziness, fatigue, autonomic dysfunction and heart rate issues through her childhood, adolescence and into adulthood but often wondered if the constant chronic pain was in her head or actually in her body.
Finally, in 2013, after completing a bachelor’s degree at St. Francis Xavier University in Antigonish and working on additional courses at Dalhousie University in Halifax, Regan was officially diagnosed with EDS, Ehlersdanlos syndromes, a group of 13 incurable, heritable, connective tissue disorders.
“I’m not crazy and I’m not lazy,” Regan said of the relief and assurance the diagnosis provided that there was a physical, biological explanation why she, as a child and an adult, couldn’t do the things she wanted to or that others could.
“We’ve always known that something was not right,” Regan said. “The question was is it in my head or in my body.
“What we deal with every day is people not understanding, people not being aware of the symptoms, people not knowing that one can appear healthy and have a lot more going on, on the inside. Growing up and not being able to do things that other people could do or doing them and being absolutely exhausted, tanked and in pain from it, pushing and pushing and pushing, and then feeling like everyone else seems to be able to do these things and they are not exhausted, I must just be weak.
CONNECTIVE TISSUE DISORDER
“It’s internalized discrimination, almost, as well as external. It’s a complicated and complex illness and when doctors don’t understand it, it makes it difficult for those with us to understand it.”
The conditions of EDS are caused by genetic changes that affect connective tissue. Each type of EDS has its own set of features with distinct diagnostic criteria. Some features are seen across all types of EDS, including joint hypermobility, skin hyperextensibility, and tissue fragility.
“When I was at Dalhousie doing those courses and I couldn’t walk anymore, my mom said there is more going on here, I see what you’re going through, I believe you,” Regan said. “That meant everything to me. She did a lot of research. I was working with my doctors and we were ruling out things like MS and lupus and Lyme disease. I got a cancellation appointment a few months later with a rheumatologist who said I either had hypermobile joint syndrome, which is a former classification of HSD (Hypermobility spectrum disorders) or EDS. I was diagnosed then by the rheumatologist and two years later the connective tissue disorder clinic was able to see me and they officially diagnosed EDS.”
Regan’s mother, Kelly Regan, a former Liberal cabinet minister and the current MLA for Bedford Basin, introduced a bill last week to establish May as Ehlers-danlos Syndrome and Hypermobility Spectrum Disorder Awareness Month. It stalled at first reading in the Progressive Conservativecontrolled legislature.
“If the government will designate a month Ehlers Danlos Syndrome awareness month and HSD awareness month it will make a massive difference in our province,” Regan said. “We absolutely need more awareness so we can get more funding, attract more doctors who know about EDS, who have trained in EDS so that the people here can get the proper treatment. When we see doctors who don’t understand our illness, they can often make it worse.”
The prevalence of the different sub-types of EDS and HDS in Nova Scotia and Canada is hard to quantify because many people do not realize they have one of the afflictions.
“Most of the subtypes are about one in a million,” Regan said. “The sub-type that I’m part of, the hypermobility sub-type is about one in 3,000 to 5,000. They used to think it was one in 20,000 but it’s a lot more common.”
LARGE COMMUNITY
Regan’s girlfriend, Victoria Brushett, and Regan’s roommate, Kimberly Stalker, joined Regan and others who all suffer from EDS and HDS at Province House last week.
“We have a large community here,” Regan said. “We would have had more people out here today but they are ill. They are getting treatments or are in too much pain to leave the house.”
The symptoms and effects have an immense impact, she said.
“Currently I am not able to work because of the amount of dislocations I have and the newly diagnosed Postural Orthostatic Tachycardia Syndrome that I have as well,” Regan said. “It may limit the amount of time I can stand, it may limit if I can have a shower that day, it may limit my ability to do things with my friends or partner. It’s very, very restrictive. It restricts the kind of food I can eat and when I can eat it, everything is kind of ruled by the EDS. That’s why my mom said you have to respect the EDS.”
The life expectancy for someone with the vascular sub-type is 48 years, Regan said, but people in her subtype are “less likely to suffer from catastrophic injury,” but it is possible.
“My type, thankfully, I’ll just live a long life in pain, that’s all,” Regan said.