Continue Aaron’s fight

I just got back from four weeks in my special place, Maui, I never feel as alive, as healthy and as ‘normal’ as I do when in Maui. There’s something about that place that brings me closer than anything to the person I use to be before getting hit with the Autoimmune Disease stick. While on holidays, I saw a documentary that affected me so deeply that I couldn’t stop crying for days. I’d just think about it and would start crying while on the beach, or having lunch, or making supper – my husband thought I had lost it.

The documentary was “The Internet’s Own Boy” the story of Aaron Swartz. (You can see it in it’s entirety here: ) Why did it affect me so hard? Several reasons.

I am writing a book right now. It’s slow coming but now with Hana back at school, I’m sure it will start whizzing by again. I am not, nor have I ever been one of those people who likes to point out a problem and just let it go. I want to also have a solution. I see a way towards the goal of uniting all of the science so that we can have a database where we can look for the common thread between all 140+ Autoimmune Diseases. I have been working out the details in my mind for months, and then I see this documentary about Aaron. I’m a nobody with a really gross, incurable, stupid, life threatening disease, Aaron was a brilliant – BRILLIANT – young man who was idealistic, and wanted to use his amazing brain to better society instead of taking the all to familiar route of lining his pockets and making himself a cushy life. He did the right thing. He saw the problem, which is other people lining their pockets at the expense of an entire civilization. He wrote the Guerrilla Open Access Manifesto which describes the problem very clearly (you can read it here: ) and the solution. Problem is with this (and freeing a bunch of scientific articles from their prison) he ruffled many a feather of people who had already lined their pockets but were now addicted to that lining and would stop at nothing to not have it be interrupted in any way.  Politicians got involved, small minded, big ego prosecutors got involved and were threatening to take Aaron’s freedom in return. The story doesn’t end well, but with his efforts he is indirectly responsible for saving countless lives, and for stopping big business interest in implementing draconian internet censorship by stopping SOPA.

We have lost an enormous mind in Aaron, but his inspiration will be with me forever, because he dared to stand up to the insanity that is research and publication and big business for everyone of us. He saw the problem and he tackled it head on. Without the sharing of information, we will keep banging our heads against a wall until the end of time without anything more than little, microscopic answers to a very big and complicated question. We have the technology to sift through all the research, but we don’t have access to said research because there is too much money to be made. Publishing houses need to stand up and do the right thing. But that’ll be a whole chapter or two in my book. I can see the solution… really I can see it, and it’s doable if we are serious about healing the sick on our own continent.


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. ( 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.