EMILY HSUEH
SHAWVILLE March 31, 2021
At 16 years-old, Jenna Keindel was diagnosed with limb-girdle muscular dystrophy, a rare form of muscular dystrophy. Her muscles became weaker with each day, but no one was able to say how her condition would progress; LGMD has many genetic subtypes, and the doctors could not find any genes responsible.
As an active member of the muscular dystrophy community, Keindel met many people affected by the incurable disease and joined several support groups online. It was in one of these groups that she came across . . .
a scientific article that caught her attention. It was a text that detailed how LGMD mimicked an autoimmune disorder, and the story just clicked.
“I printed the article off, I brought it to my doctor and I emailed it to her before my appointment and said, ‘Can you just look this over? I’d like to talk about it when I have my next appointment,’” Keindel said. “She was familiar with the article when I went to my appointment, and then we were able to discuss it.”
Keindel was tested for the autoimmune disorder anti-HMGCR myopathy in 2019, and the results came back positive. After living with her LGMD diagnosis for 23 years, she finally had an answer and a treatment path.
Today, Keindel, who resides in Shawville and works with the Society of Rural Physicians of Canada, is sharing her story through the Ottawa Hospital as a patient advisor. She has given speeches to patients and medical experts alike, to motivate them and to lend her experience to research.
One day, she was approached by a doctor who had heard one of those talks.
“They’re trying to promote and launch new policies for open access research. One of the researchers who listened to my patient story on this other talk reached out and just said how relevant my story was to their mission and creating open access research for making a change in standard right now,” explained Keindel. “So that’s why she basically wanted me to be a prime example as to why it’s so valuable and important to have research and publications be available to patients, and available to the public.”
In Keindel’s case, the article that led to her new diagnosis was something she knew she could trust. But she has seen her fair share of questionable articles, and learned to take things with a grain of salt. She added that most credible papers are locked behind paywalls or subscriptions, making them inaccessible to those who need them the most.
“Unfortunately, the internet is full of just people’s opinions, and not necessarily the right things that people should be reading,” she said. “The problem was when you read one of those, you know, vetted documents, one click leads you to five more documents that are just as much garbage as the first one you were reading.”
She has become an advocate for open science practices
“I’m always happy to help and push for the good articles that are online to hopefully help others,” she said.
Since her autoimmune diagnosis, Keindel has been progressing well in her treatment. She took part in aquaphysio and made strides, being able to walk straighter and faster and climb stairs in the pool.
“I know that there’s been improvements in my strength in that I have a little bit of better balance, I’m able to reach things a little bit better. People have noticed that I talk with my hands a lot more,” she said.
However, since the pandemic struck, she has not been able to go to a pool for her treatment. In the meantime, she is doing physiotherapy at the Pontiac Community Hospital, but hopes after she is vaccinated she can get back in the water.
She is also continuing her work with muscular dystrophy, organizing charity walks in her community every year, and giving support to those affected by it.
“I’ve been an advocate and supporter and fundraising for years and years with Muscular Dystrophy Canada. But then when I got my new diagnosis, I was like, ‘Oh, no, I don’t have a family anymore.’ You know, that’s my, those are my people,” she recalled.
Upon contacting the organization and discussing it with them, she got a welcome surprise.
“They’re actually adding my condition — that’s the new condition that’s just been discovered — to their roster of conditions that they support. And so they’re going to be doing a campaign to help and also I can still access funding from them.”
Looking to the future, Keindel will give more patient talks and has already begun planning her next annual Walk for Muscular Dystrophy, which will take place June 9 as a virtual event. The link to her donation page and more information can be found here: https://tinyurl.com/nw3wwyz5.
