1. Your message to kids today that you wish you knew back then what you currently know now. Be specific.
I wish I knew more about autoimmune disease. I wish I knew how hard life is with so many of them and that if any of my family had one of the 100+ diseases I was at higher risk of getting one myself. I wish that I knew that if you had one, even a minor one like eczema that this opens the door to some potentially deadly ones and being aware of what goes into my body can be the difference between a healthy productive life or a life with chronic illness and way too much time spent in doctor’s offices or hospitals. I wish I knew that 1 out of 5 Americans (and by association Canadians) are dealing with an autoimmune disease or disorder and out of that 20% of our population 70% are females. I wish I would have known that autoimmune disease is one of the top ten causes of death for female children and women under 65 years old.
2. How did you learn your lesson or what was your lesson? Did you get hurt, did you upset someone, did you get scared?
I learned my lesson the hard way by acquiring one of those diseases. There are about 140 some of which are rare, some are very rare and some are not rare at all like MS, Rheumatoid Arthritis, Lupus, Ciliac, Crohn’s, Type 1 Diabetes, and on and on. I have one of the rarer ones, Wegener’s Granulomatosis, but when you look past the part of the human anatomy being affected, it’s no different from all the others on the list. All of us have an immune system that has stopped recognizing the difference between self and non self and is attacking its own vessel. My lesson was that there is a gaping hole in the information about this disease group as a whole that can help people make more educated and conscious decisions in their life that could eliminate contact with a possible trigger if you happen to be predisposed. I got motivated. Motivated into action to do everything in my power to change this and unite all of those with autoimmune diseases to stand together and raise that needed awareness that can save lives.
3. What you would have done differently back then if you could turn back time?
Had I known this info before I got sick I would have done greater research into foods that can help prevent and deal with minor inflammatory responses, I would have stayed away from having contact with anything that would increase the normal immune response to higher than normal levels. I would also have gone in the right direction at the onset of symptoms (currently getting diagnosed with an autoimmune disease is a long, difficult process rife with insinuations of hypochondria and melodrama from society and the medical profession â through no fault of their own, it’s a lack of knowledge and education in this field) and possibly could have had the possibility to reverse the process rather than being stuck with a lifelong incurable disease.
4. Do you convey this message to children in your life today?
Yes, I convey this message to my daughter, to my friends, my community and anyone willing to listen. I wish everyone knows now what I wish I knew then. I started Pajama Day to raise awareness and we have now had two with it growing exponentially. We now have interest from large corporate sponsors and I will make sure this piece of info snowballs forward and reaches maximum velocity to a point where we will find the common thread to all these diseases and autoimmune will no longer be a problem.
5. Anything else you`d like to add?
Here’s a page on my blog that will give you a rundown of our last two PJ Day events in Jasper. We managed to get a TV Breakfast Show to come up and shoot their entire 3.5 hour show live from our town where the Second Annual PJ Day was taking place. You will find links to those live shots, as well as photo links and viedos of our evening show.
- Marta Rode