Last Monday I told you my uveitis was back. Today I want to tell you about how we can do something about that and help the 50 million-plus Americans living with one or more autoimmune conditions.
I’m the board treasurer of the Autoimmune Association. For those of you who don’t know, it’s the national nonprofit working on autoimmune disease, research, advocacy, all of it, and I joined the board because after eighteen years of living inside this I wanted to be useful somewhere other than my own body. (Once a CPA, always a CPA.)
On Saturday, September 19th we’re holding the Second Annual Hope Journey Walk. There are two in-person walks, one at The Wharf in DC and one at Independence Oaks County Park in Clarkston, Michigan. I’ll be at The Wharf (hint, hint).
Now I know most of you reading this aren’t getting on a train or a flight to DC, which is why they created a Walk Anywhere option. You pick the place. A sidewalk, a school track, the park, the treadmill in your basement, gardening. It all counts.
So much of living with an autoimmune condition is being told what you can and can’t do and on whose timeline, usually by people who mean well. This one lets you go where you are, at whatever pace your body can handle.
When I got my seventh diagnosis (yep 7th), I figured there was something truly wrong with me personally. Why me? Then I realized this is just how autoimmune tends to work. If you have one, chances are you’re going to have more. About 1 in 4 people with an autoimmune disease end up with more than one.
The money for the Lace Up for Hope walk goes to research and advocacy, and to shortening the four years and six doctors it currently takes the average person to get an accurate diagnosis. For one of mine it took fifteen years and countless doctors sending me down dead end paths.
The National Academies looked at where the NIH puts its research dollars and found autoimmune disease sitting at 2.6 percent of the total, and it stayed at 2.6 percent from 2013 through 2020 while the overall budget grew. Over fifty million of us, more than a hundred and forty diseases, no cures, 2.6 percent.
So, two ways in. If you want to walk, send me a note and I’ll add you to my team. It’s $45 in person, $30 to Walk Anywhere, free for kids 12 and under. If you’d rather just give (even $5 helps), my page is give.autoimmune.org/IndiesHope.
September 19. Wherever you are.
With love, Indie