When people ask Jeff MacMahon what caused his wife’s illness and untimely death, he doesn’t have an answer—because there isn’t an answer to give.
Currently, there’s no research that shows exactly what causes autoimmune diseases.
Although there are nearly 150 diseases that fall under the autoimmune umbrella, doctors have yet to find a common thread that links them all.
“Everybody asks me, ‘what caused it?’ That’s the million dollar question when it comes to autoimmunity,” said MacMahon. “Where’s the link?”
Michelle MacMahon, Jeff’s wife and the mother of his four children, passed away Feb. 15 after being diagnosed with Behcet’s disease, a chronic, multi-system autoimmune disease that involves the inflammation of blood vessels throughout the body.
It’s a rare disease and, because many of its symptoms overlap with those of other more common diseases, it’s often difficult to diagnose.
Michelle was 44.
On Feb. 27, in her memory and in a continued effort to raise awareness for autoimmune diseases, Jasperites flooded the streets for the fourth annual PJ Day. PJ-clad folks marched through town in an effort to break a Guinness World Record, they did yoga, worked out, danced and, ultimately, spread the word about the search for a common thread.
Throughout the day, the community also raised $10,000, all of which has been donated to the MacMahon’s to help them as they grieve.
PJ Day was started by Marta Rode in 2012. It had been a year since she was in the thick of her own autoimmune crisis, struggling with a Wegener’s granulomatosis diagnosis.
Like Behcet’s, Wegener’s is a rare autoimmune disease. It affects one in 40,000 people; it’s incurable and life-threatening and it requires long-term immunosuppression through the use of powerful medication or chemotherapy.
It took Rode months before she was correctly diagnosed with Wegener’s, having first been told it was stage-two lung cancer, and throughout the process, she became more and more infuriated.
She felt she wasn’t being heard by her doctors and she wanted to do something to help others who suffer with autoimmune diseases. So, she started PJ Day and the Find The Common Thread Foundation.
Last year on PJ Day, Michelle was too ill to join in the festivities, but she celebrated at home.
This year, in her honour, her family walked in the march alongside hundreds of other Jasperites. (More than 600 people signed in and it’s estimated a few hundred more joined the crowd along the way, as it mades its way down Connaught Drive and Patricia Street, and ultimately to the Jasper Elementary School.)
“We were so impressed with the turnout,” said MacMahon, who was there along with his kids. “If you look at how the support and the awareness has grown in Jasper, just over the course of the last year, it’s huge.
“Us, as a family and as a community, can draw attention to this and maybe raise awareness or help generate fundraising to support it—that’s what the medical field needs to continue its research and move forward with this.
“It’s going to be the power of the people in the communities that help the medical field with their research and maybe one day, hopefully sooner rather than later, they’ll find that common thread.”
Moving forward, MacMahon said that will be his family’s mission: to educate people about autoimmune diseases and to work to find the common thread.
One in five people have an autoimmune disease. There are nearly 150 of them, ranging from lupus to Crohn’s to rheumatoid arthritis and hyperthyroidism. Some can be managed with medication or treatments, while others are fatal.
For Michelle, it began with tiredness, a loss of energy, forgetfulness and numbness in her limbs, and it wasn’t until a year later when she began to exhibit more severe symptoms—extreme nausea, imbalance and memory loss—that her doctors were able to come up with a diagnosis.
At first they thought it might be multiple sclerosis, but after administering the necessary tests, it was scratched off the list.
Then, it was like following the branches of a tree, going down different paths in search of the correct diagnosis.
“The routes that you can take are limitless,” said MacMahon, noting that once Michelle’s symptoms were more severe her doctors were finally able to zero in on what was wrong, first determining that it was a neurological autoimmune diseases.
“That’s when the MRIs came, that’s when the CT scans came and that’s when they saw the inflammation in the neurological part of Michelle’s body.”
That inflammation was found on her cerebellum, a region of the brain that plays an important role in motor control. It was a large mass that doctors later removed.
After the surgery, Michelle seemed to recover. She turned a corner and was on the way to becoming her old self.
“It looked like things were turning around. We were able to go out camping, she was able to do all kinds of things, but then in the fall her symptoms started to come back and reappear, mostly the imbalance and the memory,” recalled MacMahon.
The inflammation had moved deeper into an area near the brain stem, where doctors couldn’t operate. Michelle then began taking medication, but her illness accelerated until she was hospitalized late last year.
“I think it was Dec. 30 when we went in for a scheduled appointment with our neurologist that he said ‘you’re staying here, we’re keeping you here.’
“There was no other choice, we had to stay, we had to go through the next level of medication to try and control it. Michelle was in there from then right through until February and we never did get her home from there.
“The hardest thing to accept was looking at her, anybody will tell you, she was the most healthy person on the planet—so strong—but from her hairline up, that was where the problem was.
“But that’s the nature of autoimmunity.”
In an effort to shed light on her disease and to further autoimmune research, Michelle allowed her neurological team to perform an autopsy and study her brain.
“That was kind of Michelle’s gift,” said MacMahon.
“At the end of the day, both Michelle and I wanted to know more—what would be would be, but at least we could understand better and then help other people understand, too.”
To learn more about the Find The Common Thread Foundation or autoimmune diseases, visit www.findthecommonthread.com.
Nicole Veerman
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