Four years ago Marta Rode could hardly walk, eat, drink or breathe.
The Jasperite was a shadow of her old, on-the-go self, spending her days curled up in her pyjamas, feeling weak and unwell.
It took months before her doctors could figure out was wrong. Then, finally, after dozens of doctor鈥檚 appointments and tests, she was diagnosed with Wegener鈥檚 granulomatosis, a rare autoimmune disease that affects one in 40,000 people.
Wegener鈥檚 is an incurable and life-threatening disease that requires long-term treatment through the use of powerful medications or chemotherapy.
For Rode, it鈥檚 been a long journey back to her old self, but today she鈥檚 feeling healthier than she has in years鈥攁lthough not as healthy as she did before her diagnosis鈥攁nd she鈥檚 putting what energy she has into her personal 鈥渕ission to change the world.鈥�
That mission began three years ago when she dreamed up Pyjama Day鈥攁n event to raise awareness about autoimmune diseases, of which there are about 150 ranging from arthritis to lupus to Wegener鈥檚 and hyperthyroidism. An autoimmune disease is a disease that causes the body鈥檚 immune system to attack the very organs it is meant to protect.
Since the start, Pyjama Day has been celebrated on Rare Disease Day, Feb. 28, because many autoimmune diseases fall under the umbrella of rare diseases.
Rode鈥檚 intention with the annual event is to raise money to help find a common thread between the 150 diseases, so that doctors can start treating the diseases rather than the symptoms.
This year, the day will be 鈥渂igger鈥� than ever, said Rode, who invites everyone in the community to don their favourite sleepwear to work, school or out to the grocery store, Feb. 28.
Included in the festivities this year will be a contest to see who can come up with the best public service announcement (PSA). The announcement could be made for print, television or radio.
The prize for the best one will be $500.
So far, two classes at the Jasper Junior/Senior High School are set to put their efforts toward a PSA, and Rode is going to send the challenge out to both the Northern Alberta Institute of Technology and the Southern Alberta Institute of Technology.
The winning PSA will be debuted on Pyjama Day during the 鈥減arking lot party鈥� that will take place next to the Old Fire Hall in the evening. Rode said the event will replace the fashion show that has taken place the past two years and will include live music and activities that make it feel like a festival.
As with previous years, there will also be an event up at Marmot Basin, with people skiing down the hill in their sleepwear, and there will likely be a PJ run through town, as well as PJ yoga at some point during the day.
And to get the word beyond Jasper, Breakfast Television will be joining us again this year.
Rode encourages the entire community to get involved with the day, whether that just means wearing pyjamas, showing up to the filming of the show or organizing a fundraiser in support of a charity for autoimmune diseases.
鈥淚 really feel like we can change the world,鈥� said Rode with a huge grin on her face.
To learn more about autoimmune diseases or Rode鈥檚 mission to find a common thread, visit www.findthecommonthread.com.
Or to contact Rode about organizing your own event to coincide with the day, email [email protected].
Nicole Veerman
[email protected]
