This image is for you Janet

I am just writing this to make sure we are all clear.

I am not one of those proprietary types who wants to keep control of everything. I’m not in this for the glory. I’m in it to do all that I can to move us closer to finding a cure for autoimmunity. Oooops, I used the word ‘cure’ that is trademarked by the Susan G. Komen foundation  – millions of donated dollars for cancer research might come my way in lawyer costs to sue me. But I digress.  The reason I want to push as many people out there who are suffering from an autoimmune disease and either don’t see much happening in terms of research in their diseases or else they see the possibly and power we can have by joining forces and pushing for autoimmune disease awareness and research, that reason is that I want a cure / common thread found before my daughter grows up and potentially has to deal with an autoimmune disease herself. Genetic predisposition and environmental trigger. That’s the lowest common denominator we have so far, and it doesn’t bode well for our kids. Let’s dig deeper.

What I really want to say with this post is that I don’t care about branding or about using the term find the common thread. If you are interested in helping, have some great ideas, have some friends with just the right skill set – do it, get on board, do something creative and funky in your community. If you have access to media – go for it. If you wanna do a calendar – go for it. If you want to get on a soapbox and preach in Hyde Park, go for it. I am personally blown away at the positive response in my little community. We have a bunch of stuff on the go, and I’d love to be able to help all around the world, but I have a limited number of spoons, if you know what I mean. I have a family, a job, a home to take care of and a not so healthy body. I’m doing a lot of this from my computer and you can too. Have fun brainstorming, go for coffee with some friends and just throw a bunch of ideas up in the air – and see what sticks. This is our little revolution. This is a super cool opportunity where a bunch of sick people can propel something to make a positive global change. I am still sick. I keep hoping to get back to my old normal, but I think it’ll be a tougher road than I originally thought, but my new normal is way cooler on the inside. I like the new me that has emerged because of this disease. It has toughened me up inside and I think that we can all probably say the same thing. So a bunch of weak on the physical side, but tougher than nails on the inside people can push and push and push until the world hears us and starts paying attention to this group of diseases that has thus far gone pretty much unrecognized.

YOU be the instrument of change. The power within you is greater than you can imagine.

2 thoughts on “We want you for the revolution

  1. Hi Sam,

    I’m getting all of my stats from the American Autoimmune Related Disease Association (www.aarda.org.) I have been trying to get stats from Canada, but unfortunately there is nobody doing this for the whole disease group as there is in the States. This is what I have a problem with. There is a whole group of diseases that range from mild and bearable (which I’ve been dealing with since I was a kid) to deadly and dibilitating, as you and I are aware – I have Wegener’s Granulomatosis (1 in 30,000 to 40,000) and was fighting for my life not even two years ago and continue to struggle with getting even a semblance of my old life back. I see so many of us dealing with similar issues while we’ve been segregated into our own ‘boxes’ fighting for the same thing. A cure. I’m sure there are studies out there that if the intellectual property is shared between groups, would bring us closer to our common goal. The stats on how much money goes towards cancer, heart and stroke vs autoimmunity is shocking. I don’t want to take any money away from the others, but we need to stand up and be counted instead of being the money cow for pharmaceutical companies. I’ve met people with autoimmune diseases that aren’t aware that their disease is an autoimmune. Even some docs I’ve met are in the dark about autoimmunity. It’s like the mysterious topic that they don’t want to talk about much. I’ve had some amazing docs over the last two years and I have had some not so amazing docs.

    I’m glad that you would support a movement that is accurate. I would cringe at the thought that I’m putting anything out there that isn’t. Here’s where I’ve gotten my stats:
    http://www.aarda.org/autoimmune_statistics.php
    http://www.aarda.org/women_and_autoimmunity.php
    http://www.aarda.org/research.php
    http://www.aarda.org/links.php
    http://www.aarda.org/common_thread.php
    Here’s the One in Five: http://www.aarda.org/mission_statement.php

    And like I said this is info from the United States, however due to no Canadian information on this level and the fact that we tend to have such similar stats when it comes to health, lifestyle, economics (although we’re a little better in that department) I am using the American stats.

    I’ve also heard there is some camps that believe that cancer and autoimmunity are related, but I’ve read some of the arguments and am not quite convinced, but that’s the humble opinion of just a regular schmo (me) who hasn’t gone to med school. I see that the disease mechanism is similar, but the trigger is not.

    I hope that the answer I have given you is able to help you get on board and support, if not, I’m totally willing and looking forward to seeing some other stats that would prove me wrong, so please feel free to pass them on. I think it would be great if there were less of us affected. I would be thrilled to see that we’re getting more money going to research, although after looking through the Canadian Institute of Health Research – autoimmunity isn’t faring so well. Thanks for your note, and I look forward to hearing from you again.

    Marta

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