Canadian is Spreading Awareness About Ehlers-Danlos Syndrome
Jennifer is raising awareness for EDS Awareness Month with a proclamation signed by her Mayor and this well-done article in her local newspaper.
“Jennifer Howie is spreading awareness about Ehlers-Danlos Syndrome (EDS), a rare connective tissue disorder that affects one in 5,000 people, and can cause a variety of health maladies.
Howie was diagnosed with EDS last May, and, to her knowledge, she is the only person in Estevan who has been identified with the condition. EDS results in reduced collagen levels, and in Howie’s case, it has affected her joints.
Howie has always been double-jointed. It led to her being awkward as a child, but she was healthy, and rarely had to visit a doctor.
“I grew up pretty average,” she told Lifestyles. “Other than being clumsy, I used to sprain quite a bit in my ankles and my wrists, but there was never any indication that there was ever anything seriously wrong with me.”
She never knew she had EDS. In fact, she’d never heard of the condition until recently.
Three years ago, her health took a negative turn. She was referred by her local physician to a physiatrist in Regina, who assessed her as hypermobile, since she is double jointed. She also had musculoskeletal issues.
“He basically said that if I strengthen my core, a lot of my pain and my symptoms would go away in about six weeks, although he did indicate that it would be a lifelong thing, and that I would have to maintain good core strength,” said Howie.
Howie had been working at an office job, which she enjoyed, for about eight months when the health issues surfaced. She was previously a daytime babysitter, so there was a shift from active self-employment to sitting at a desk.
Combined with lane swimming, the EDS symptoms were exacerbated.
She tried about six forms of painkillers, but none of them worked. Howie reached the point where she couldn’t work anymore, because she suffered neck, shoulder and back pain after sitting for prolonged periods of time.
“An internet search on hypermobility led to me finding out about Ehlers-Danlos Syndrome,” said Howie. “And I hooked up with a lot of message groups online, and connected with quite a few people in western Canada – there are different Facebook groups that are geared towards western Canada specifically.”
But since it’s so rare, it’s also hard to diagnose, she said.
“I think a lot of patients with EDS are alone because … the doctors do consider it rare,” said Howie. “From what I’ve understood, in medical school, most doctors touch on the subject, but maybe it’s a chapter in a textbook, or it might be all of 20 minutes to half an hour that they learn about it.
“They’re under the impression that because it’s connected to tissue, the main symptom of the first type of EDS, the classic case, is skin involvement.”
Howie’s skin doesn’t stretch, so EDS was initially discounted.
“EDS can affect a person’s joints, skin, organs, blood vessels, bones, muscles, tendons or ligaments – basically anything that collagen is a part of, because collagen actually is a protein in a person’s body, and it provides the strength to a person’s cells,” said Howie.
There are six types of EDS; Howie has Type 3, which attacks the joints.
“Because of the collagen involvement, every system in the body can be affected, from your vascular system to your endocrine system to your digestive system,” said Howie.
“There’s nothing that can be untouched. I think that’s why doctors find it so hard to diagnose, because there are so many different types, so many components. A lot of the symptoms can stand alone as a diagnosis, or they can be part of a completely different diagnosis.”
It wasn’t until a year ago, when she had an appointment with Calgary geneticist Dr. Harris Yee, that she was officially diagnosed with EDS. Ironically, Yee also has the condition.
Yee was the 12th doctor that Howie had seen in two years. He took the time to explain the symptoms that she might experience in the future. He walked her through her family’s medical history, and helped Howie realize some of her relatives might have had EDS.
“It came from my mom’s family, and, ironically enough, I think both of her parents had it, so the chances of the family members getting it were quite good, although I’m the first member of my family to be diagnosed,” said Howie.
Her children also attended the appointment. It’s still too early to tell if they have EDS, Howie said, but they have some symptoms. Both scored eight of nine on the Beighton Hypermobility Score – a joint test used for EDS. Howie is also an eight on the test.
Arms, elbows, wrists, fingers, knees and other joints are evaluated through the Beighton Score.
Howie said her wrists are troublesome. When she removes wet laundry from the washing machine, her wrists will pop out of joint. It can be tough for her to lift children. Wrist braces provide some relief.
She wears a soft collar for her neck when she travels on long trips, and it can be difficult for her to shoulder-check when she is driving.
There isn’t a cure or a treatment for EDS, Howie said.
But she considers herself fortunate to have Type 3, because she knows that it could be worse. One woman that she knows in Swift Current has a paralyzed digestive system from EDS, so she has a feeding tube in her stomach, and has to consume food in liquid form.
Another woman in Caronport, who is in her mid-20s, is occasionally confined to a wheelchair, because when she walks, her joints will dislocate.
And those whose vascular systems are affected by EDS have an average life span of 48 years, Howie said.
Howie noted that EDS has a mascot, which is a zebra, and Howie said it is appropriate. When people hear hoof steps, they would naturally expect a horse; they might not think it’s a zebra. In the same way, physicians might not be looking for EDS, and will diagnose it as another condition.
Howie is now working hard to teach others about EDS and the impact it has on health. Mayor Roy Ludwig has proclaimed May as Ehlers-Danlos Syndrome Month in Estevan. And she wants to make sure that her children receive the best treatment possible, because if they do have EDS, she doesn’t want them to go through the same uncertainty associated with the condition.”
In May, many EDS support groups are conducting EDS awareness activities in their local communities.
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