Just heard that term yesterday when I was doing a guest lecture at a Medical Anthropology class at the University of Alberta. So here’s the deal. When you are faced with a long term chronic disease, or have had your normal life taken away by a crippling event people have basically two directions to go. One is you can withdraw from society and close yourself up and go ‘within’ to deal with the new condition and change in life. The other direction is to turn it outward and do things that are beyond what you would have done or did in your previous healthy life. I was described as a super crip, and it was in my opinion an overstated description but I think that all of you are. We have a mission to do great things and I believe with all my heart that we can accomplish this mission and that our accomplishment is dependent on us working together. So gather together super crips and lets change the world.

Who not to ask for help in spreading the word

The pharmaceutical companies that’s who. I am blown away as I watch some evening TV that almost every second ad is for drugs for some sort of autoimmune disorder or disease. We are a captive audience with an endless need for their expensive drugs. Not pred of course because it’s gone past the deadline and has become a generic drug. Not so for the others. I was just getting infused today with a drug that for the two treatments I get costs almost $10,000. I was talking to a wonderful lady who has a friend who HAS to take a medicine that has a half-life of 2 minutes and needs to be administered intravenously so she has a permanent pic line and the drug sits on a fanny pack – her drug that keeps her going costs $6,000 per month. I was also talking about a mutual friend who’s wife has an autoimmune disease and can’t get drugs because they can’t afford them and don’t have insurance. Her husband has to watch his wife in pain and sit there knowing he is hog tied by Big Pharma and can’t do anything about it. With other diseases the expensive drugs are administered in a relatively short period of time with the hopes of eliminating the disease. With autoimmunity, which is often if not always chronic, the drugs are administered to maintain a quality of life and possible remission, but the disease is with you for ever in most cases and you are a slave to the therapy.

Still don’t believe me? Check this out –

Here’s a little bit on Humira:

Here’s a report from AARDA ( I really like that group )

We are here….

Who will be the Horton to our Whoville?
So I’ve put this out there to quite a few people and companies that can make a difference and stand up for something that affects so many. I haven’t heard back much. C’mon people throw me a bone.  This is a good cause, I promise you. It will be big even next year when I have more than a couple of months to get it going (and I’m not doing chemo sessions while doing all of this.) If you get on board now you can tell the world that you were in on it on a grass-roots level… before anyone else got in, before anyone else knew what was coming. This is a real opportunity to make a change on a worldwide scale. All you have to do is get on board.

I haven’t asked anyone for any money. That’s not our goal this year. Our goal is awareness. We just want you to help us spread the word and put on your jammies for one day (it’s an extra day this year, make it count and do something worthwhile – what have you got to lose).

Stand up and speak for those who are disfigured by awful drugs and awful diseases and can’t stand up and speak for themselves because they’re in hospitals or hiding out in their homes because their friends don’t recognize them or they’re so immune suppressed they are afraid of the most common germs, germs that can put them in ICU’s (that’s Intensive Care Units for those of you who’ve been lucky enough to never know that term.)

Autoimmune disease can be mild and treatable with as much as a change in diet or they can be devastating and life threatening and require toxic chemo and high doses of steroids (both have their own very horrible side effects that can also lead to complications ending in an untimely demise.) The bad thing is that once you have one you are more susceptible to others and they can come at you from nowhere and can be deadly. There is also a genetic predisposition so if you have one that’s mild, your child might be open to one that is not so mild. My mom has fibromyalgia, my dad has lupus, my sister has psoriatic arthritis and I have Wegener’s Granulomatosis. I was knocking on death’s doorstep not that long ago, but he wasn’t home that day and I’m here knocking on yours now. Will you answer the door or treat me like the Electrolux salesman of days gone by? Please look inside your heart and make the right decision.

If you want to go fast, go alone. If you want to go far, go together. (I saw this in a store today and it gave me goosebumps). Let’s go all the way and push for a cure/common thread for all autoimmune diseases and disorders.

JoJo - one small voice one huge difference.
Will you be our JoJo?

I do have to say that there are many of us ‘little people’ (who are actually sick) and those who love us who are doing a lot. We’re organizing a fashion show, a dance and possibly a PJ run on the 29th in my town. Some of the businesses are already on board and will have their staff wear PJ’s, and we have friends in England who are doing the same. I have friends in some small towns in the US doing the same, so I want to make sure that you know this is not dependent on which big company gets on board. We’ll start small and keep growing like a snowball coming down the hill in a Bugs Bunny cartoon…. but it sure would be great if some of the people with a wider reach and bigger voices would jump on board and amplify our call. Imagine one of the last scenes in Horton Hears a Who, where the Whoville’s are screaming in unison to let the outside world know they are there… “we are here! we are here! we are here! we are here!…..” and one small voice is the tipping point that breaks through the barrier. Is that voice going to be yours?

We are here! We are here! We are here! We are here!

Autoimmunity Fact Sheet


Autoimmune Disease…is a major health problem.
• The National Institutes of Health (NIH estimates up to 23.5 million Americans suffer from autoimmune disease and that the prevalence is rising.
• Researchers have identified 80-100 different autoimmune diseases and suspect at least 40 additional diseases of having an autoimmune basis. These diseases are chronic and can be life-threatening.
• Autoimmune disease is one of the top 10 leading causes of death in female children and women in all age groups up to 64 years. of age.
• A close genetic relationship exists among autoimmune disease, explaining clustering in individuals and families as well as a common pathway of disease.
• Commonly used immunosuppressant treatments lead to devastating long-term side effects.
• The Institute of Medicine reports that the US is behind other countries in research into immune system self recognition, the process involved in autoimmune disease.
• Understanding how to modulate immune system activity will benefit transplant recipients, cancer patients, AIDS patients and infectious disease patients.

…faces critical obstacles in diagnosis and treatment.
• Symptoms cross many specialties and can affect all body organs.
• Medical education provides minimal learning about autoimmune disease.
• Specialists are generally unaware of interrelationships among the different autoimmune diseases or advances in treatment outside their own specialty area.
• Initial symptoms are often intermittent and unspecific until the disease becomes acute.
• Research is generally disease-specific and limited in scope. More information-sharing and crossover among research projects on different autoimmune diseases is needed.

…offers surprising statistical comparisons with other disease groups.
• NIH estimates up to 23.5 million Americans have an AD. In comparison, cancer affects up to 9 million and heart disease up to 22 million.
• NIH estimates annual direct health care costs for AD to be in the range of $100 billion (source: NIH presentation by Dr. Fauci, NIAID). In comparison, cancers costs are $57 billion (source: NIH,ACS), and heart and stroke costs are $200 billion (source: NIH, AHA).
• NIH research funding for AD in 2003 came to $591 million. In comparison, cancer funding came to $6.1 billion; and heart and stroke, to $2.4 billion (source: NIH).
• The NIH Autoimmune Diseases Research Plan states; “Research discoveries of the last decade have made autoimmune research one of the most promising areas of new discovery.”
• According to the Department of Health and Human Services’ Office of Women’s Health, autoimmune disease and disorders ranked #1 in a top ten list of most popular health topics requested by callers to the National Women’s Health Information Center.


One little person at a time

It’s almost feeling like this is a musical kind of place, but I saw this today and have to share it as I find it so powerful on so many different levels. I find it so cool that a combination of efforts and skills from people around the world that might not even know each other can make such a powerful statement and, yes, change the world for the better. This is exactly what we’re trying to do here, my friends that I know and those that I don’t… we are all in the same boat, trying to row against the same current, looking at the same final destination of a better life not just for us and our families but for millions of other people who will benefit from our success – people who will have no idea that our actions are helping them as we seem so unrelated, but we are….

Here’s the song….

This movement is gaining momentum. Our movement that is. People who had no idea they belong to such a huge group are starting to see the light. I keep reading articles about various autoimmune diseases and at the end of each one there’s the statement “we need more research into this disease”, and it really strikes me how we all have compartmentalized ourselves into little boxes. Imagine if we all stood together and said “we need more research into this disease – autoimmunity” – just imagine how strong and loud our communal voice will be and how the world will have no other option than to listen. With finding a common thread we can free up millions from suffering and free up billions of dollars taken up in the medical systems of the world right now treating chronic illness for other illnesses and medical research for all kinds of other problems. Everyone, EVERYONE, will benefit from a successful campaign here. EVERY ONE!