As you may know, February 29th (28th on non-leap years) is Rare Disease Awareness Day. This is a day of the year where we try to bring attention and education about any number of rare conditions that can affect the population, which are low on funding, research, and support.
My wife was diagnosed last year with Behcet's Disease/Behcet's Syndrome, a form of vasculitis which can affect every blood vessel in her body. It is a chronic and incurable condition. Since receiving her diagnosis, she has been on three separate medications (none of which have worked, and all of which have caused her to be varying levels of immuno-compromised). She has been in extreme joint and muscle pain nearly every day, which is not helped by the cold climate in our part of Canada at this time of year. On any given night, it's 50/50 odds on whether she can get a decent/full night's sleep. There is no physical relief. The disease has disabled her and, in general, negatively affected her mental health and quality of life.
My younger sister went through breast cancer treatment last year and while I would not wish that experience on anyone, nor would I call it anything close to easy, it has been somewhat remarkable to see the difference that it makes having a well-known, well-researched disease vs. having one that medical professionals haven't heard of, or need spelled out for them when they're making notes to your file.
She is my sweet bun, my soul mate and my literal best friend, and I can't do anything to help her. I can't bring her relief; I can't find a cure. But I can do a little bit to bring awareness, in the hopes that the more people know, the more attention we can bring this condition; much like the journey that EDS and POTS patients have been through in the past few years, sometimes visibility is key to having these rare diseases recognized, understood, and tackled.
I have made two copies of the zine available for download and print/distribution. The first one is scanned and resized to be printable on a home inkjet printer with standard margins; there will be white space at the edges of some pages, but it will fold evenly and the pages will be aligned correctly.
The second one is a scan of the full 8.5x11 original. It's very nearly edge to edge. If you have access to a printer that can print full bleed, this one has the better formatting and is more "accurate" to the original.
