I didn’t know I had an autoimmune disease until I met Marta Rode.
When we sat down for an interview four years ago—as she was planning the first-ever PJ Day to raise awareness about autoimmune diseases—I had been knowingly living with hypothyroidism for five years; but even after all of that time, every morning taking my daily dose of synthetic thyroid hormones, it came as a shock that my illness is among dozens of other ailments under the autoimmune disease umbrella.
There are actually nearly 150 autoimmune diseases, ranging from rheumatoid arthritis to lupus, Crohn’s, multiple sclerosis and Wegener’s granulomatosis—the disease Rode was diagnosed with five years ago—and according to the American Autoimmune Related Diseases Association, one in five people have one.
In an effort to help people like herself—as well as people like me—Rode has spent the past four years working to find the common thread between the 150 autoimmune diseases, so doctors can start treating the diseases themselves rather than their symptoms alone.
Rode embraced this mission after spending months as a guinea pig, waiting for her doctors to correctly diagnose her.
Wegener’s is a rare autoimmune disease that affects one in 40,000 people; it’s incurable and life-threatening and requires long-term immunosuppression—weakening of the immune system—through the use of powerful medication or chemotherapy.
Rode’s Wegener’s journey started with an H1N1 vaccination—a needle she believes triggered her illness.
Her symptoms began with the popping of her ears on her way up to Marmot Basin—it was something that could happen to anyone, but Rode’s ears never “unpopped.”
After a few weeks she went to the doctor and was given antibiotics. But they didn’t help, nor did the second bout or third bout, or having tubes put in her ears. And at that point she was suffering from incredible, debilitating pain.
Rode, whose daughter was only three years old at the time, then began losing weight; she was having problems walking, eating, drinking and even breathing.
It took months before she was correctly diagnosed with Wegener’s, having first been told it was stage-two lung cancer.
When Rode and I met four years ago, she openly shared her story with me over a cup of coffee, her face still puffy from her latest round of prednisone treatment. She was exhausted by her treatments and infuriated with her doctors—the people who were meant to help her, but just wouldn’t seem to listen.
We bonded over our experiences that day. I shared my story of entering the doctors office at 20 years old with heart palpitations, an increased heart rate, high blood pressure, anxiety and shaky hands and walking out with a choice: one radioactive iodine treatment or daily medication.
After careful consideration I chose radiation.
A month after the treatment I had gained 20 pounds, lost all energy and started suffering from intense muscle aches; my dose was too high and my thyroid was shot.
So, then started the medication, which took months to get right, causing my body to see-saw back and forth between hypothyroidism and hyperthyroidism.
It took a year before I felt any semblance of “normal”.
As I shared my story with Rode that day, I felt for the first time like someone could relate, and I was inspired by her drive to take action.
It’s for that reason that I haven’t missed a PJ Day. Even when everyone in my office refused to wear theirs, I showed up in my favourite plaid pants and sported them all day.
I do it because I understand what it’s like to sit at home for days, weeks or even months in my pyjamas, looking seemingly normal, but feeling completely wretched as my body fights against me. I do it because I believe in Rode’s mission to find the common thread, and because I want everyone to recognize that I, like many others, represent the one in five people that live with an autoimmune disease.
This year, all of the proceeds from PJ Day will go toward a local family living through its own autoimmune crisis. Funds will be raised during the PJ Superhero Family Fun Night. The evening includes a gluten-free dinner, a fashion show—with dresses designed to represent different autoimmune diseases—and a family dance.
It takes place Feb. 27 at the Jasper Activity Centre. The doors open at 6:30 p.m.
Rode is also hoping to break the Guinness World Record for the most PJ-clad people in one place at one time. Find out more .
To learn more about autoimmune diseases or Rode’s mission to find a common thread, visit www.findthecommonthread.com, or to offer your services as a volunteer, contact Rode at [email protected].
Nicole Veerman
[email protected]
