Wow! What a fantastic day we had on PJ Day. What a community! What amazing friends!
Below you will find some links to the show from Breakfast Television and all the fun we had during PJ Day, but I want to stress that this is not something for just having fun and getting together in or PJ’s. We’re in our PJ’s for a reason.
Why are we in our PJ’s on PJ Day? We’re in our PJ’s because autoimmunity is a nasty disease. We’re not lazy. We’re not just tired and have decided to stay in bed. Many of us are fighting to stay alive. Many have no energy because our bodies are waging war on us from the inside, and sometimes there is such a limited supply of energy, a shower seems like an insurmountable effort. Symptoms wax and wane – if you’re lucky, but there are so many that are not that lucky and can be stuck in ‘acute’ state for weeks, months or years. Autoimmunity is not a pretty picture. It sucks frankly. It also sucks because the medical profession can do very little to help us get out of the hole. For many, if not most of the diseases on the list (http://findthecommonthread.com/list-of-ai-diseases-and-disorders/) there is no cure. The only thing we can do is treat symptoms, and suppress the immune system by giving the patient nasty drugs like chemotherapy – sometimes (as is the case with me) for life. Chemo is not fun. It renders the user very vulnerable to the everyday bugs that are floating in every enclosed environment we experience. I have lost three fantastic – FANTASTIC – people from my life in the last short while to infections that most people would have been able to fight off but they couldn’t because of the treatment they’re on for Wegener’s Granulomatosis (my flavour of autoimmunity.) This is wrong. This is so very very wrong, and we need to do something about it. We need to change things, and I know that the person who comes up with a cure for autoimmunity will be up for a Nobel Prize. This will change things like nothing else in the last 100 years of medicine.
What is autoimmunity?
Well, you’ve seen above the list of autoimmune diseases, and what they all have in common is that our immune system has gone haywire. Its job in a normal situation is to distinguish between the self and the non-self and attack the latter. That would be bacteria, virus, parasites… anything in the body that you didn’t originally come with. In autoimmunity it attacks the ‘self’. What is different between the different autoimmune diseases is where within the body this erroneous attack is occurring. MS (Multiple Sclerosis) is when the immune system attacks the myelin sheath, RA (Rheumatoid Arthritis) is when the immune system attacks joints, Vasculitis is an attack on blood vessels, Eczema is an attack on skin cells, and on and on and on it goes. What a lot of people don’t understand is that a large percentage of these diseases also work in a systemic way, attacking the whole system – which is why it is so hard to get a diagnosis in the early stages. Symptoms tend to be transient and variable, so by the time you get to the doctor for the thing that’s been bugging you, it is no longer bugging you and now you have a different issue, which will be different tomorrow, or the next day. This is why I find it absolutely mind boggling that in this day and age when we are seeing an increase in autoimmune disease, and it is hitting people in younger age groups than ever before (and too often killing them because medical profession isn’t expecting to see it in such young patients) we have doctor’s offices that have signs that read “One symptom per visit.” I don’t know of anything that gets my blood boiling more than that. These are doctors who are not interested in helping people. These are the guys who got in the game for the wrong reason, and if you see that sign, get out of that office as fast as your feet will carry you.
Autoimmunity is serious, serious business. Those who are trapped in its web suffer greatly. Their families suffer even more. Our society suffers because of autoimmunity, yet we never hear it mentioned as a group anywhere. When we see the common thread and thus the cure for autoimmunity, we will not only help those directly affected by it, but also our health care system. We will free up so much money for other diseases. When we figure out how to modulate the immune system we can help cancer patients (who are on the other side of an immune system gone haywire, in their case the immune system is not attacking the non-self as it is supposed to,) we will help transplant patients, we will help AIDS patients, and infectious disease patients. Together we can change things so fundamentally that we will be living in a much better world from a healthcare perspective.
Now back to some PJ FUN. Getting the word out.
Thanks again BT for coming to Jasper and helping us spread the word.
Evening Show at Jasper Activity Centre
https://www.youtube.com/watch?v=8yhAkA7TVk8 (Grade Ones singing “What I Am” by will.i.am)
https://www.youtube.com/watch?v=TptJv-8RWaQ (John and son Will breakdancing for PJ Day)
https://www.youtube.com/watch?v=KCoPSQ8HGdA (Grade 8-9 Girls Dance Program and Grade Ones mosh pit in front of stage)
https://www.youtube.com/watch?v=r9zonGEMAtQ (some dancing, some fashion show action, and some more dancing – all in PJ’s to raise awareness for autoimmune disease)
http://youtu.be/pvAO4ALBi0A (why we are doing this and the thank yous for our town for supporting)
and here is the crazy blog radio interview I did before the PJ Day event to get the word out in the United States.