The Problem:
Autoimmune Disease affects one in five people (AARDA – American Autoimmune Related Disease Association,) 75% of which are women. From the ones that most people know of like MS, RA, Diabetes, Lupus, to ones that you have heard of but had no idea it was an autoimmune disease or disorder like Raynaud’s Syndrome, Narcolepsy, Eczema, Aloepecia, to very rare that you only hear of if you’re one of the lucky ones to get it or have a friend of family member who has, like Wegener’s Granulomatosis – there are over 140 altogether. It is one of the top ten killers of women under 65 years old and female children. Even though it affects 20% of the population it often takes patients months, years or decades to get a proper diagnosis at the expense of eliminating the possibility to reverse the disease process. Autoimmune diseases (the more lethal ones) are often caught when the disease becomes acute and the patient is in serious distress or life threatening situation, whereas if caught early many autoimmune diseases can be reversible.
Autoimmune disease, previously perceived in popular culture as “an old person’s disease” is now pulling strong productive members of society out of the work force and rendering many in financial distress. There are babies younger than one who are getting diagnosed with diseases previously thought of as reserved only for the elderly in our population. These young children, once diagnosed, are on toxic, drug cocktails for their entire lives not only having to worry about the ravages of the disease but also the potential deadly side effects of the medicines that keep them alive.
Autoimmune Disease attacks different parts of the body sending patients to various specialists who deal with that area of anatomy. This is the reason we are so very segregated as a disease group. There is research going on within different disease groups but the information stays within that group and doesn’t have a chance to be reviewed by people who are working on the same problem from a different (disease) perspective .
Autoimmune Disease comes with a heavy price tag on individual lives, families, employers, insurance companies, health care costs, and overall cost to our economy, yet the attention and funding going towards research in this area is minimal compared to two other major disease groups. But nobody has studied this problem in Canada as a whole. We are basing all of our information from AARDA in the United States.
Goals:
Raise public awareness of the widespread presence of autoimmune diseases and to raise funds to contribute to research to find the common thread unifying various forms of autoimmune disease in order to discover preventative measures and develop cures.
The foundation is designed to focus on:
Awareness
- Raising awareness for autoimmune disease as a whole
Research
- Support research that falls within the overall goal of the Foundation
Relationships
- Build relationships and create partnerships with other foundations to create a unified disease group front
- Work with various organizations and partners to increase our reach and develop products that meet our mandate
- Create relationships that will benefit everyone and hurt no one.
Canadian Content
- Work towards creating a Canadian database and solicit research towards Canadian epidemiology for this disease group
On The Ground
- Promote healthy choices to minimize risk and provide information and support for the diagnosed
Update: This Foundation was disbanded in 2020 after the start of the pandemic. I have removed our board members, as I know some of them don’t agree with my stance on vaccine mandates. It was a good run while it lasted, and we raised some awareness about autoimmune disease.
My introduction into autoimmune disease was due to a vaccine injury in 2009. I didn’t think this is something I wanted to focus on because my goal was to unite autoimmune patients into one cohesive unit (which happens to be 1/5 of the population). Vaccine injuries on the other hand affect a small amount of people, are a very divisive subject to discuss, and I didn’t feel this was something worth tackling. The problem is that our government made it a topic worth tackling, and have taken rights away from people who have real legitimate reasons for not getting one. In Canada, our government has ostracized and vilified almost 6,000,000 people. For a medical choice. A right every patient has.
Sadly, I feel like I need to focus on this topic now, as our esteemed leader seems to think it’s ok to freeze Canadian citizens’ bank accounts for disagreeing with him. Politics should stay out of medicine, and a drama teacher should not be dictating what I have to inject into my system. Full stop.
Find The Common Thread Foundation 
Hello, my name Trisha and I have rheumatoid arthritis, lupus, graves disease and Sjogren’s
Disease. I always wondered why so many suffered from AI diseases and I never saw a fund raiser or a teledebilitatingunable to work and have 3 children.It is about time attention is called to these debilitating diseases and I thank you for standing up for those who cannot.
Hugs. We can stand up together!!!!
Hey Marta. I was watching your spot on BT (in my onesie) and was inspired by you. Then on sunday my boyfriend was told me he had Autoimmune hemolytic anemia. They tried to treat it with steroids no luck. So now he is took take some pretty potent drugs. I have researched and have found some information, but its rare and not much has been done in the way of research. Is there a specific web site that can help? I want to treat him holistically as well as what his doctor decides. We.are also looking for support during this time, are there support groups we can contact? Amd how can I help with your group to bring awareness to this topic?
Cheers. Paula
Hey Paula,
I’m sorry to hear about your boyfriend. It’s a tough ride finding out you have a disease that is rare and comes with little research or support. I have been on that roller-coaster myself for the last four years. I too have a nasty treatment schedule. I must not be understanding something though. If he was diagnosed on Sunday how can they know that the steroids aren’t helping? It takes longer (months) for them to do their thing, although they can take a few days for you to feel pain relief once treatment starts. Usually chemotherapy (especially for the ones they don’t understand fully) is used to suppress the immune system and the steroids do the same plus they decrease inflammation, which is what causes most of the problems.) This is exactly why Find The Common Thread was started. I know that the only way we will see cures, real cures, is by looking for what’s the common thread of all, or most of the autoimmune diseases. What we’re doing now is obviously not working… at least not in a timely manner.
As far as support groups are concerned, keep looking. In my experience some are great and some not so much. You have to go around and see what’s out there and the tone with which members support each other. I know that the group I belong to has saved my butt several times when docs were just too busy and too under-read in my particular disease to be helpful. Also try and find a doc who has seen more than a handful of cases, I know that a lot of the disease manifestation and receptiveness to treatment is variable amongst the population so you need someone who has experienced that variation (outside of a textbook) and can react accordingly. It’s truly worth the effort. Rheumatologists are the best at quarterbacking autoimmune disease and then they get a team related to the symptomology you’re experiencing.
Hope that helps.
Marta
Hello Marta,
I happened upon your blog tonight via the Edmonton Rheumatology website as they have your website / blog link listed. I had heard of the Pyjama Day in Jasper via a lady who was taking an on-line writing course with me last year, a long time Jasper resident – Vickie W. I applaud all your efforts in creating awareness about AI diseases.
I read the story of your diagnosis on your webpage. I am sorry you had to go through what you did to get help / the right diagnosis.
I was first diagnosed with Sjogren’s Syndrome, then Undifferentiated Connective Tissue Disease (initially they thought Lupus but then also had symptoms of Dermatomyositis so went with the UCTD), and then most recently AI Hepatitis, so then they got the big guns out….so I know exactly about being on Prednisone and Immune-suppressant Chemo meds.
Wishing you all the best,
Suzanne
HI Suzanne,
First and foremost sorry for the late reply. I never go into the email account for this blog and just saw this for the first time. I’m sorry that you’ve gone through the same nasty ride. I remember thinking at the start of my journey how horrible the experience of trying to get a diagnosis was for Wegener’s, but as I started on my quest to unite Autoimmunies and make a stand for us as a group, I realized that the journey is not exclusive to my disease but all of our disease – autoimmune.
Vicky is an amazing lady. I love her. I use to work with her for a few years at the Information Centre here in Jasper and I’m very glad she joined our paths. If you ever want to join the PJ Day extravaganza, let me know and we can brainstorm something that would be easy to do but impactful. That’s our ‘golden ticket’ so to speak… making it happen together and we will find a cure together.
All the best with your journey and if you’re ever in Jasper look me up.
Marta,
I am the President of the M.E.(Myalgic Encephalomyelitis) Society of Edmonton. M.E. is also called chronic fatigue syndrome, which I’ve noticed you list on your site (**). I’d appreciate the opportunity to meet with your group to learn how we could be of benefit to each other.
Hi Chuck,
Please contact me at madcap01 at telusplanet dot net and we can chat. I’ve gotten the list from the AARDA site and can change that asterick. I know how hard it is to get proper treatment as my mom has M.E. – I also think that calling it M.E. will benefit so many of it’s victims as there seems to be a stigma that comes with it from so many years of not understanding it by the medical profession. I am so open to talking and working together, you have no idea. I’m trying to get a bunch of things in play that will help patients get a quicker diagnosis and hopefully reverse the negative side effects that are normally left to fester and take hold to a point of no return. This isn’t just for M.E. but for all autoimmune disease.
Thanks for contacting me, and hopefully we’ll chat soon.
marta