Another year, another PJ Day

For the fourth year in a row, we will once again stand in solidarity with those whose voice, strength, vitality, and life as they knew it, was muffled (sometimes permanently) by one of the 100+ Autoimmune Diseases.

  • 1 in 5 people are affected.
  • 3 out 4 of those are female.
  • There is no cure.
  • Often toxic treatment only adresses symptoms.

This year PJ Day is becoming PJ Days.
Get your PJ’s ready for

Saturday, February 28, 2015
– Rare Disease Day
&
Sunday, March 01, 2015
– First day of Autoimmune Disease Awareness Month.

(Jasper schedule of events to follow.)

Wear your PJ’s all day. Participate in this act of ‘nonviolent fashion disobedience’ and make a powerful statement. Take it one step further and create a PJ Day event. Do something you’re comfortable or good at, and just do it in your PJ’s. Have a party, organize a run with friends, go out dancing in PJ’s, cross country ski in your PJ’s, have a PJ downhill ski race, have a soccer match, a golf game, or roller derby clad in PJ’s …. it’s as limited as your imagination.

Stand up for the MILLIONS who can’t stand up on their own. Their own well intentioned but  confused immune system, mistakingly waging war on them from the inside, taking out organs, systems and more often than most realize, lives.

This year our friends at AARDA (American Autoimmune Related Disease Association) have come up with an idea inspired by the last three years of PJ Days in Jasper. The BEST little community in North America. Truly. Here’s what Kimberly and the AARDA crew have started. Kudos, and let’s keep that ball rolling.

#PJdancechallenge

This is such a great opportunity to raise awareness, some money, and take PJ Day and Autoimmune Disease awareness, one giant step forward in the consciousness of our human tribe, while bringing out the kid in us all. You know, that kid  that lives under the sometimes very broken body we call home. So put on your PJ’s and start a fire. A fire of inspiration, support, understanding and empathy.

Practice for performance, Jasper
Practice for performance, Jasper

Autoimmune Disease has it’s inflamed little fingers into many pots

Today I read an article about Heart Disease and how there is a new line of thinking that links the process that causes most of the problems in patients with Autoimmune Disease to that of clogged arteries. Inflammation.

Read the article here: http://www.tunedbody.com/heart-surgeon-declares-really-causes-heart-illness/
If you feel that you need back-up on this line of thinking, here’s another article that isn’t as bold, but goes in the same direction and it’s from the American Heart Association: https://www.heart.org/HEARTORG/Conditions/Inflammation-and-Heart-Disease_UCM_432150_Article.jsp

Another important connection that nobody seems to talk about is mental health. I don’t understand why we can understand that inflammatory responses can happen anywhere in the body, but completely take the brain, a vital organ, out of that equation. Why do we completely dismiss the brain as being susceptible to an inflammatory response that can run rampant in any other part of the body and cause one of the 140+ autoimmune diseases and disorders. How many lives can we save from endless suffering by connecting autoimmune disease with mental health disorders? Here’s a book that can bring this concept a little closer to home and might save your life if you’re a patient like me who likes to push and challenge the robotic responses that we often get from the overworked medical professionals. This is the story of a patient who almost lost everything until she landed in the care of the RIGHT doctor…. Brain on Fire

We also know that Cancer is very dependent on a faulty immune system in order to progress, and now there is a new line of Cancer research that uses Immunotherapy to try and get answers that continue to elude the cure for Cancer research. http://www.cancerresearch.org/cancer-immunotherapy/resources/cancer-and-the-immune-system

So if we go back to my earlier post looking at the stats and our current research trends (https://findthecommonthread.com/2012/02/06/so-blue-working-towards-equity/) you can see a serious crack in the system. The disease group where answers dwell for all the others (including ones that are not on the charts like AIDS, Infectious Disease, Transplantation) is the group of disease that has the least amount of attention and research funding.

I think this is wrong. So very, very wrong.

Back in my earlier post that I referred to above, my thought process leads me to a place where I wonder if the answer is just below the surface of a cache we haven’t yet searched.
I’ve been questioning myself lately in my stubborn and unyielding view that if we find the common thread we can find the answer/cure to ALL of the Autoimmune Diseases. I feel like a person with serious delusions of grandeur. Today, instead of checking my big dreams a bit like normal people would, I’ve taken it one step further. One giant, giant step further… what if we find the common thread and the answer leads us to not only find a cure for ALL AI Diseases, but also for Cancer, for Heart Disease, for AIDS, for all of the chronic illnesses.

Now wouldn’t that be something that would change things a bit or what?

We have gone for so long in our own little holes, our own silos, fighting for our own little diseases and not the whole, but the big picture is becoming more and more clear. It dictates that we work together: Be it within the disease group (autoimmune, cancer, mental health) but I believe it would be more positive by working in a multi-disciplinary, multi-disease way. That’s when we’ll get the answers we all so desperately work for in our own groups. Our answer lies in working together.

T-O-G-E-T-H-E-R.

Only together will we see a difference. We’ve tried the ‘solo’ approach for decades and it’s gotten us nowhere really. Yeah we have some crazy drugs that keep us alive, but at a huge cost not only to the patient and their families, but also to our health care system and society at large.

So snap out of it people, we must let the ego go, and let’s do this. Let’s do it together. Let’s change the world for the better.

You in?

Why

I don’t know if I’ve ever articulated the why of this whole thing. Why am I so insanely single minded about this whole ‘Find The Common Thread’ campaign?

Because I think we can solve so many problems and eliminate so much suffering if we change the focus of our query  and work together, both as patients, and also as physicians and researchers. That is to say that we all are seeking the same outcome, the understanding and ultimate elimination of disease. We need to work together because many of the perceived different diseases are related with immune system deficiency. Autoimmune Disease is an overactive immune response targeting various organs and/or systems. There are, as you’ve seen elsewhere on this blog, over 140 autoimmune disorders and diseases that affect 20% of the population. (https://findthecommonthread.com/list-of-ai-diseases-and-disorders/) Many of these disease patients go to very different specialists, from neurologists, to nephrologists, to cardiologists, to endocrinologist, rheumatologist, dermatologists, and on and on,  and their symptoms are dealt with according to their needs. Research tends to work in similar paths. But by working together we can do something great. By looking for the commonality in all of our diseases we can find an answer for all of them. By changing our focus from inside the silo of our individual diseases and looking at it from a single disease perspective, we can save lives, we can improve economy by keeping a large percentage of the population, healthy, happy and productive, and we can save billions in health care costs, allowing for extra research and patient care.

But wait. If we get an understanding of how our immune system works from the combination of knowledge and research towards that goal, we will at worst, save 20% of the population in those who have autoimmune disease. By understanding our immune system, we will get a much better handle on cancer which is deficient immune response on the other side of the spectrum. In autoimmune the immune response turns on its own body “self”, and cancer is an immune response that is not attacking the “other” cells that are attacking its body. We will also get a better handle on infectious diseases and help those patients. AIDS research would benefit greatly from a more detailed map of the workings of the immune system.

There will be stumbling blocks along the way but if there’s a will, there will be a way. For us to really be successful we will need to all take the high road and work together toward finding a cure. And when we work together I don’t think that something as insanely big as the idea of not only finding a cure for one disease but finding a cure for all of them at once doesn’t sound so crazy. If we truly work together we can truly do something great and save 1 in 5 people from pain, suffering and an early death,  with one swell swoop, possibly even more.

So I challenge any organization that is looking for a cure for autoimmune disease (or any of the others for that matter) to jump on board and have a Pajama Day Event in your area on February 28, 2014. Only together can we pull this off. But it can be pulled off.

Your imagination is your only limitation to an opportunity to unite all autoimmune disease groups for one day and change the perspective from which we can look for a real cure, rather than more ways to deal with symptoms. Everyone of you gets that point alone. We see treatments come and go that are wrapped in a bow that says ‘cure’ on it, but ultimately how can you find a cure when we don’t really understand what the problem is. We can only understand the true scope of the problem by sharing notes and working together.