Donna’s Blog

When I set out to write THE AUTOIMMUNE EPIDEMIC I had — as many of you know — deep personal reasons for doing so. Like the hundreds of you who have written to me since THE AUTOIMMUNE EPIDEMIC came out, I suffer from a range of autoimmune diseases, including Guillain Barre Syndrome (GBS), small fiber sensory neuropathy, thyroiditis and others.

In 2005, when I found myself paralyzed for a second time from GBS — unable to move much more than my head, unable to reach out and hold my young son or daughter, I had many long months to think. I was struck by the fact that I was lying just a few floors away from where my own father had died in 1972 — 33 years earlier — from what would certainly now be diagnosed as autoimmune disease. My dad checked into the hospital to have part of his intestines removed — for an inflammatory bowel disorder. He was also on heavy doses of steroids for what was very likely rheumatoid arthritis (though we wouldn’t have known to call it that at the time). A few hours after his surgery, his surgeons realized that the steroids were causing the surgical sutures to dissolve. There was nothing to be done. He never came home.

There one day, playing checkers and taking us out for a sail, then ripped away from us, a young father of four — at the age of 42.

Thirty-three years later there I was — paralyzed by a neurological autoimmune disease — with my own two children at home, and told I might never walk again. Every fiber of my being wanted to get up and walk out the door of that hospital, raise my young son and daughter the way any other mother might, love them, tie their shoes, smooth back their hair, dry their tears, play checkers and chess, toss the football, go for a jog beside my kids on their bikes, or even just stand at the sidelines of a lacrosse game and cheer – all the things my dad just didn’t get a chance to do for very long with me.

I’m walking well now, after a long haul. Like many of you, I have good days and bed days; a kind of mercurial up and down that most autoimmune disease patients know all too well. And even on the best of days it’s a little like having the flu by seven p.m. I know, from the hundreds and hundreds of letters and emails that you’ve sent me, that you know how that feels, too. Like all of you, I am continually searching out — and implementing — ways to become as healthy as I possibly can.

And that’s what THE AUTOIMMUNE EPIDEMIC has really been about: helping you, the patients, to understand both what goes into your “barrel” to play a role in triggering autoimmune disease – and what you can take out of that barrel to help ameliorate disease and move toward your optimum level of health and well-being.

There are so many of us out there searching for these answers. Rates of autoimmune diseases have tripled in the last four decades and 1 in 9 women (and 1 in 12 Americans) can now expect to have an autoimmune disease. Indeed, a woman today is 8 times more likely to have an autoimmune disease than breast cancer.

In listening to your “Letters from the Autoimmune Epidemic” you seem to be particularly interested in sharing your ideas and insights about what works and what doesn’t in terms of helping you move toward wellness.

It is my deepest hope that this site will become a place where we can all support, educate and help each other.

I urge each of you to post your story — your “Letters From the Autoimmune Epidemic” — below.

What has given you hope? What helps you on the road to health and what do you need to avoid? We can all learn from your observations.

The registration process allows you to maintain as much privacy as you need.

Working together, perhaps we can make sure that we all get to be the active, vibrant parents and spouses and friends — or kids-growing-up-to-have-normal-lives — that we long to be. Isn’t it time we raised our voices in unison to make change happen? Let’s raise our collective voices — now.

My father would have loved to have had that chance. Let’s not waste it.

Even though the number of those who suffer from autoimmune diseases has more than tripled in the three decades since my father died, this still remains a silent epidemic. Consider these facts:                 1) Ninety percent of people still say they can’t name a single autoimmune disease.

2) Autoimmune disease research still gets one-tenth the funding of cancer (despite the fact that autoimmunity afflicts close to three times the number of people).

3) Autoimmune disease is still not a reportable disease (doctors don’t have to report data to any national registry when a patient is diagnosed with autoimmune disease — the way they must when a patient is diagnosed with cancer) so we still don’t really know how many people really have these diseases. Indeed, our ballpark number of 24 million may be much lower than the reality.

For decades, not much happened in terms of our progress in diagnosing and treating these diseases, either. But we’re now entering a new era of understanding as to how these diseases attack the body and how to treat them – not just with emerging drugs but with a whole new range of approaches that are often driven by patients searching for a road to wellness.

We can share that knowledge today as never before and help change the course of these diseases.
What do you think needs to happen — on a national level?