Letters From the Autoimmune Epidemic
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.
Donna Jackson Nakazawa is a nationally acclaimed researcher, writer and public speaker on health and family issues. She is the author of the recent book, The Autoimmune Epidemic.
May 8th, 2008 at 7:53 pm
I’m having trouble addressing the question “what has given you hope.” I have to be honest and say that in recent months my awareness of the interaction of chemicals in our environment and the epidemic of autoimmune disease is pretty frightening for society as a whole.
My diagnosis of autoimmune thyroiditis is relatively new (10 months ago). My other autoimmune disorder (immune thrombocytopenic purpura) has had a very minor impact in my quality of life. My thyroid disease troubles me and honestly, the only hope I have is that I can get my dosage optimized. That hasn’t happened yet. One hopeful note is that I now know that many of my symptoms are related to this one disease and when optimized I may have a stab at feeling my age, rather than 20 years older. I’m hoping for a ‘one stop healing.’ Hoping…
I have learned how to avoid doing too much and getting too ’stressed.’ I value doing ‘nothing.’ Doing nothing is sometimes more important than anything. This is something our culture does not value and it is a big mistake. Take time to stop and look out the window, take time to say hello to a stranger, take time to ’smell the roses.’
Along the same lines, I have learned to appreciate. Small things, when I do have energy, when my mind is sharp, I appreciate that. If I’m feeling badly I stop and make a list of the things that I have in my life that I deeply appreciate. I’m not going to speed through my life without stopping to take stock of all the good in it. Sometimes the good is very subtle and it’s a prize when you find it!
May 8th, 2008 at 11:34 pm
Donna,
Thank you for writing “The Autoimmune Epidemic” and raising awareness about the poisons that threaten the health of so many people. I am enjoying your book immensely and I’ve already recommended it to friends and family, many of whom either suffer from an autoimmune disease or have a loved one in such a predicament.
My story is probably typical of so many with an autoimmune disease. Last September, I began experiencing lower intestinal distress which caused pretty severe stomach bloating and cramping (along with other obvious symptoms of digestive issues). After a few weeks, I felt weak, tired and flu-ish . . . so much so I went to the ER. They referred me to a gastroenterologist who first diagnosed me with IBS. However, I continued to feel weaker and after a week, the GE included CPK enzyme levels in the blood tests. As it turns out, that was a good call; instead of being below 200, the CPK was 67,800, a clear sign my muscle cells were under attack.
The GE sent me to a rheumatologist, who initially diagnosed me as having polymyositis. He scheduled me for a muscle biopsy to confirm this on Halloween, 2007. Meanwhile, he put me on prednisone to address the inflammation. The evening before the surgery, though, I was so weak that I had him make sure I was admitted into the hospital after the surgery. As it turns out, I didn’t leave the hospital until December 4th!
I had many ups and downs in the hospital and inpatient rehab center, including heart issues which brought in a cardiologist and stress tests (thankfully, my heart is fine). My GE performed a colonoscopy on me there, too, and diagnosed me with infectious colitis. It seemed like every system was breaking down!
I got to the point where I had to rely on a walker to get to the bathroom from the hospital bed . . . I could barely lift my arms higher than my shoulders. I lost a lot of weight due to dysphagia and general lack of appetite. Insomnia became my best / worst friend despite the sleeping pills I was given.
The treatment for my DM included IV steroids and a five day course of IVIG (along with several other medications). Around Thanksgiving, I was transferred to the inpatient rehab center where I began PT and OT. The folks there did a wonderful job rehabilitating me, especially with the challenge of my feeling such profound fatigue all the time, limiting my stamina for much exercise.
When I was discharged in December, I was no longer reliant on the walker and spent the rest of the month going to outpatient PT. I was able to return to work in early January and by the end of that month, my CPK level was down to 92. The rheumatologist felt that my PM was monophasic and soon the experience would be a distant memory. Good news, but not for long.
My new GE gave me another colonoscopy and changed the diagnosis from infectious to ulcerative colitis. He told me it was chronic, prescribed medication and sent me on my way. Chronic autoimmune disease #1!
In late February, I started feeling the flu-ish feeling again and then the difficulty swallowing returned. A new blood test showed my CPK popped back up to 3400. In addition, I had new symptoms . . . a reddish rash on the knuckles of both hands and around the nail beds. The rheumatologist took one look and confirmed I actually had dermatomyositis and this time it was chronic - #2.
Since then, I’ve been on steroids and have had a three day course of IVIG. The dysphagia is still there, causing me to lose even more weight that I already had. Today, I had my first session with a speech therapist for the swallowing problems, an action recommended by my doctor after a barium swallow test showed the dysfunction and a stricture in the upper esophagus.
What has given me hope? I’ve always been a follower of the “positive mental attitude” school. My wife has always told me I have more serotonin than anyone she’s ever known, obviously a good thing during such difficult times. PMA is more than just a buzz word, it’s truly a way of life.
What helps me on the road to health? The medication, especially the IVIG, has made the major difference on these recoveries. I’m soon going to be strong enough to start an exercise program again, so as long as I don’t overdo it, I’m sure that will help me further along the road. As for what to avoid, I just have to learn to eat even when the thought of it tires me out due to the swallowing problems. Eventually (I hope), I’ll be able to eat “in polite company,” which I can’t do today.
As far as what should be done about this epidemic, I think that our government - along with the governments of other major Western countries - need to revisit their environmental standards, including how much they allow industry to pump into the atmosphere, what chemicals / additives they allow in our products, etc. We are being bombarded from every direction and there’s no place to hide, unfortunately. Action has to be taken by consumers and governments to reverse the impact we’ve made on our environment before it’s truly too late to turn it around.
Thank you for giving us an opportunity to be heard on such a crucial topic, Donna. I hope every American family at least learns of your book and understands how much danger we’re in.
May 9th, 2008 at 11:22 am
I was diagnosed with MS about nineteen years ago, and have dealt with allergies and other chemical challenges throughout my life. Having worked as an ecologist and in other capacities within both the built and natural environments for over thirty years, I was intrigued when I learned about your book The Autoimmune Epidemic, so I bought a copy.
The Autoimmune Epidemic does a wonderful job of documenting the suffering of people whom unawares are subjected to the toxic effects of chemicals and compounds mankind has dumped into the environment while totally denying the overall effects they might have on living systems. The book also presents wonderful scenarios about the challenges and obstacles people face in trying to learn about what is going on with them, what contributed to their suffering, finding help, and finding people willing to take responsibility for what they or others might have done and seek solutions.
When I began my healing journey, I placed little faith in reductionist science as the possible source of a solution, having too often see how limited, and many times ineffectual or even more damaging, conventional medical and pharmaceutical solutions can be. I rejected all the conventional medical and pharmaceutical offered me, and instead turned to apitherapy, ayurvedic medicine, homeopathy, nutrition, Qigong and Tai Chi, and recently have been blessed with the support of a Tibetan Doctor — and I’m still functioning fairly well for someone in their sixties.
Your advice about getting toxic chemicals out of one’s home is certainly is certainly one of the best things everyone can do — not just those of us who are challenged — but as long as chemicals that haven’t been evaluated for their toxic effects — especially on children — are allowed to be produced and used, things will only get worse. You mention the Precautionary Principle and the approach that Gerard Mullin took, and I ended up finishing the book wishing that you had put more emphasis on these.
Research trying to figure out what is going on in living systems, and how challenges might be slowed-down or perhaps put into remission are certainly worthwhile pursuits, but they are expensive and many times the treatments suggested are prohibitively expensive. Prevention is the only possible solution that is both cost effective and which will slow down the new occurrences of allergic, autoimmune and chemical reactions, and I hope that as you continue to work on these issue that you’ll encourage more funding for precautionary approaches such as the EU and other places are doing.
May 9th, 2008 at 11:19 pm
Response to Donna Jackson Nakazawa’s Request
As a partially and I hope continually recovering participant in the autoimmune epidemic, I need to begin with a statement, the review of a question, and finally with a disclaimer. Most of us with autoimmune diseases recognize that there are battles going on in our bodies between systems that are trying to keep us alive and those that are trying to protect us, but are instead trying to kill us. In my body I don’t know why the battle is being won by the pro-life side and I question what percentages of this winning streak are due to variations in the cause of the disease, by innate qualities in my body and by what I have done in actively joining the fight. I can’t claim a specific amount of responsibility for the current partial victory, yet can share with you what I have done in the hope that this information may be helpful to you.
First on my hope list is to encourage you to get others to read Donna Jackson Nakazawa’s book. We can all hope that when enough people are aware of what is happening there will be enough money allocated and enough enthusiasm generated for some answers to be found about how to reduce, or stop the epidemic. Just a few days ago, I made up a poster that references the book for my rheumatologist to show to his autoimmune patients. I gave him permission to tell them how to contact me if they might want to discuss our problems. In the film Crocodile Dundee, you might remember a discussion about the need for professional counselors in the Outback. Mr. Dundee’s response was something to the effect that when someone has a problem out there, pretty soon everyone knows about it and then it’s not a problem anymore. We need to talk about our problems both for our own sake and for the sake of others who have similar difficulties. There will still be problems, but we may generate more ideas about how to solve them.
My story begins, I expect, similar to that of many who have experienced autoimmune diseases. I woke up one morning with so much muscle and joint pain that it took about a half an hour to get out of bed. Numb hands, painful feet, and a strange sensation of cold radiating back up my esophagus following the consumption of cold drinks eventually were pieces of the puzzle. Finger prints that partially disappeared and lesions on the finger tips that opened and took weeks to heal became part of my disease experience. Flu-like symptoms and general fatigue became something that I came to recognize as usual for this kind of problem.
For about a year, or so the rheumatologists labeled my set of symptoms as undifferentiated connective tissue disease and later called it scleroderma. My family practice specialist gravely stated “We’ll keep you comfortable.” after telling me of the terminal prognosis that the diffuse form of scleroderma indicates. That was about 10 years ago. So, my second piece of advice as to how to keep some hope in your recently turned upside down life is to accept a diagnosis if you want to but don’t ever accept a prognosis as any more than a guess. Embrace the fact that autoimmune diseases are extremely variable between individuals. Two people who I know of in my community who were diagnosed with scleroderma at about the same time that I was are now dead. I’m still here.
My third hope generating suggestion is that if you have any inclination towards spiritual things, or to religion, accept the help of those who want to help you. Certainly you should communicate with your higher self and the powers greater than yourself, but listen to those who are willing to intercede for you. I received a healing prayer from a leader in the spiritual organization that I attended. When I mentioned the terminal prognosis, his response was “I don’t sense that.”. This was a man who I respected both as a person and as a spiritual leader and I will always remember the hope that his statement generated in me.
Another way to generate hope is to do something that you and perhaps others think that perhaps you shouldn’t do, or maybe are not capable of doing. You might have heard of the film, The Bucket List, in which a couple of people do some things that they want to do before they kick the bucket. After being off of motorcycles for almost 40 years, I got back on. I’m not reckless by any means and I wear full leathers, boots, and a helmet most of the time. Perhaps by the formal definition of the disease, I am terminal, but my attitude is that today is not the day to terminate and I don’t intend to let a head injury and road rash take me out. The scleroderma creates some interesting situations such as being extra careful to protect my disease induced dry eyes from the wind and dealing with the clutch-hand and throttle-hand syndromes that result from long rides combined with autoimmune induced arthritis. Did I think that I should get back onto the saddle when I did so a year ago? My common sense said no, but my personal bucket list said yes and I’m glad I listened. I genuinely Ride to Live and Live to Ride. Getting onto that motorcycle is something that I look forward to with positive anticipation and want to get out of bed, or off of my backside for. What is on your bucket list? Something on it may keep the kick away from your bucket while you, your body, and medical science find a way to empty it.
Maintain your hope reservoir by keeping busy. Go to work, volunteer, or do whatever you do even if you don’t want to. As soon as you sit down and have a chance to concentrate on your problems you are at risk of getting into more trouble than if you are trying to live and work as normally as you are able to. Figure out on your own how to adapt and recognize that there are professionals and organizations that specialize in helping people to find a way to keep doing what they want and need to do. Don’t be afraid to ask for help in keeping your life as busy and as normal as possible.
What else? Be very careful with decisions about what prescriptions to take and which ones to refuse. I have taken some heavy duty stuff and have had some heavy duty side effects along with some relief from the symptoms of the disease. I suggest that you try the medications and weigh the side effects against the benefits. Realize that damage may be done by the disease that you have, but that the medications are often just controlled poisons and will often do damage of their own. Discuss this with your doctor and make informed choices. I have taken Prednisone, Methotrexate, and Hydroxychloroquine and have experienced the benefits and the problems that they cause. I have also made informed decisions to limit and or discontinue the use of medications when the time seemed right. Currently my clutch hand works reasonably well with minimal medications. I’ll consider the heavy duty stuff again only if I have to in order to stay on the road.
Be willing to look at alternative medical thinking and be careful of what goes into your body when deciding what else to do. To the dismay of people who I worked with, I tried a garlic, almond, tomato juice, and pepper cure for a while. Unless they had a cold, or something else to affect their olfactory sense, they definitely knew when I was near. I now take probiotics routinely and believe that they can be of use. Vegetarianism and a raw foods diet has been on my treatment plan occasionally. At least a limited intake of animal protein looks like a reasonable thing for someone with an autoimmune disease to consider. In general, I believe that keeping processed foods to a minimum is important. One should limit the use of sugar and alcohol. Be careful of your exposure to chemicals. Think about all routes of entry including by mouth, lungs and skin. Be cautious about listening to new ideas, but also be open minded. Just because someone presents a new idea with enthusiasm and a sense of authority, that doesn’t mean that the idea is correct, or incorrect. A quiet, obscure, unknown person may have exactly what you need, or could be a quack. Also keep firmly in mind that sometimes your belief in a means of help may be as important as the physical substance of the method.
Don’t give up. Believe that the cure for the autoimmune epidemic will be found and that you can help to make it happen.
May 10th, 2008 at 6:04 pm
Hello,
Thank you for this conversation. I have Guillain Barre syndrome, and have found the information in your book very timely (the book was recommended to me by my Dr.).
What gives me hope is that I am recovering…and as a result have changed my whole outlook on life. I’m in my 50’s, have always been in very good physical condition, but looking back on my life, realize I have encountered many of the risk factors. The best piece of advice I have received is from an oncology nurse at Dana Farber in Boston, who puts it “Only put good gas in your tank.” She is referring not only to the food I eat, etc. but to the people I choose to be with. She believes that avoiding unpleasant, negative, critical people improves our health. She has some scientific evidence for this–work done at the Harvard School of Public Health which concludes “assaults on [our] dignity may have a greater deleterious effect on our health than the effects of bacteria and virus combined (Dr. Jonathan Mann). …
I found this interesting because prior to my attack of Guillain-Barre, a year ago, I had been exposed to the predictable pre-cursors–a recent stomach bug, eating lots of swordfish and tuna over the years, living in New England, downwind from coal-burning plants, growing up in Tucson near the TCE spills, etc. But what was the “barrel effect” for me was … my job, where I [had] several very “toxic” co-workers. Without going into details, I learned from this that I can avoid such people, and need to.
I think it all adds up–and what gives me hope is the knowledge that I can improve my environment in a thousand little ways, day by day; and although I still have lingering effects of GBS, I am a lot more joyful about life.
Your book gives me hope. I’m sorry I was unable to come to Natick to hear you speak yesterday. Keep up the blog!
May 10th, 2008 at 8:36 pm
What strikes me about all of these stories is that people, once they experience the challenge that comes with facing an autoimmune disease, begin to look so much more closely at what is working in their lives and what is not. It’s a very personal thing for each of you. Whether it’s slowing down to find the joy that comes with looking out the window, or getting on a motorcycle again after many decades to feel the wind blowing through your hair, or picking up Tai Chi and moving your energy in a new way, or stopping to say hello to a stranger and smile, disease forces us to look at what yields joy and meaning in our lives. What do we want to hold on to and what do we want to discard? What fills us with joy?
And so many of you mention hope. It seems to me, from your stories, that the joy and hope are intertwined with recovery and wellness. John Petit-Senn says “Not what we have but what we enjoy, constitutes our abundance.”
But most of you also point out that this joy and hope goes hand in hand with a cool realism — realizing that you have to change what’s in your barrel, your environment — your exposures in the day-to-day.
When are we going to take a page from Europe’s Precautionary Principle and admit we need to take a protective and preventive approach? Last June, the European Union implemented data on 30,000 chemicals over the next decade and places the responsibility on the chemical industry to demonstrate the safety of its products. Here, we wait until we can absolutely prove there is a link between a chemical and disease — an impossible feat — before we blink. Why is that? What do you think?
May 11th, 2008 at 12:37 pm
Thanks for that segue Donna! I don’t have any answers but a lot of emotion on this issue and need to ‘vent.’
I have a copy of Rachel Carson’s “Silent Spring” in front of me. She wrote the first the first edition in 1962 (over 40 years ago, a generation and a half). I read it when I was a young girl in the 1960’s. The red flag was raised for me then. There is a delicate balance in nature and our technological progress interfers with it. We don’t know what we are doing. We don’t know.
A society that ignores the red flags and pursues the course of industry over its citizens’ wellbeing is doomed. Sorry if I sound harsh but I don’t see a way out of this now. The worse thing is that this does not stay in America, we poison the well of the entire globe by this negligence.
Mother Nature/God has put into place a miracle of biochemistry on this Earth. It is beyond our comprehension. Our researchers and scientists get a little bit of information and they start dabbling in creating chemicals which they don’t know what the consequence to biology will be. But that’s OK. Go ahead anyway.
To absolutely prove a link between a chemical and disease is impossible. We are like children playing with fire; with no respect for the miracle before us, no regard for the complexity. No reverence. Those qualities are missing from our policy makers. Maybe it’s just the nature of profit driven socieities or maybe it’s just human nature to assume you know everything and your actions are always intellegent. I see it as immature and I see our society as immature and thoughtless. What happens to a renagade society? We have abandoned the very source from which we were created.
June 12th, 2008 at 5:32 pm
Hi Donna,
I just wanted to thank you for your very insightful book. I’m only half finished with it, but can’t put it down. I couldn’t sleep last night, got out of bed at 3 a.m., and have been reading off and on all day.
My son was diagnosed just over a year ago with Ulcerative Colitis. He was a month shy of seven-years-old at the time of diagnosis. He’d had what we thought was a stomach bug, but ended up with bloody diarrhea. After confirming that it wasn’t bacterial, our family practice doctor sent us to a Pediatric Gastroenterologist, who ordered an upper and lower GI.
Following the diagnosis, he spent a year on a variation of Prednisone, Colazal, Sulfasalazine, and Mesalamine suppositories. When he didn’t improve, we did another upper and lower GI just a year later.
His new diagnosis is Crohn’s Disease based on the fact that it is located in both the stomach and small intestine too now. It also had granulomas (sp?), which I understand are indicators of Crohn’s.
Anyway, the doctor wanted to do another round of prednisone, then switch to the Immunomodulator family of medicines. She specifically wants to use Methotrexate, which I’ve read is common in use with Crohn’s. I’m just not comfortable with it yet though, so we’re trying Pentasa pills first along with a round of Prednisone. He’s responding well, so blood for awhile, but it could just be the Prednisone, which is something he can’t stay on very long. We’ll have to see if the Pentasa continues to help once we phase out the steroids.
Like I said, I’m only half through your book, so you may offer insight into how to help, but in reading all the potential autogens that we face, it seems nearly impossible to avoid this epidemic.
My husband says that I can get on a soapbox about all the corruption in government, healthcare, etc., but you begin to feel that it’s almost hopeless battling these big corporate giants and the government- our government - that protects them at everyone else’s expense.
Please let me know if there is anyway I can help with the furthering of awareness of the autoimmune epidemic that is so obvious to so many people. Also, if there is any insight that someone may have into the treatment of children with Crohn’s, I’d be grateful for it. I’m having a difficult time being open to things that suppress the immune system, because it creates so many other problems. Thank you.
August 17th, 2008 at 4:20 pm
I recently saw an article in September 2008 Glamour magazine by Donna Jackson Nakazawa regarding autoimmune diseases. Now I know for sure that I’m not alone.
The autoimmune disease I have is not mentioned in the article. I have not read her book to know if it is listed. I am graced with yet another autoimmune disorder called Behcets Syndrome/Disease. Apparently, I have had this, from my recollection, since my teenage years. I am 44 years old now. It was diagnosed when I was 26 but with little hope for any treatment for quite some time. Behcets has a wide array of symptoms from irritable bowel, genital legions, canker like sores in your mouth - need I continue? It can affect any mucus membrane in your body - that opens the door to about anything.
After biopsies and a few doctors, I was on Dapsone for a number of years until I started researching the disease myself. I happened upon someone else within a 30 mile radius of where I live that had the same disease. After more digging around, I found a rheumatologist that treated 3-4 patients with Behcets. I thought I was in hog heaven.
I have been going to my rheumatologist for over a year now with great results. He put me on predisone (which I am no longer taking) and immuran with pleasant results. No, my symptoms are not completely gone but I’m in a much better place. I have read so many horror stories of people that have Behcets that are much younger than I am and have worse symptoms. I feel so blessed to be where I am today considering I have had Behcets for so long. Immuran is an immune system suppressant so I am careful about when I do get a cold or flu.
There is hope out there for anyone having an autoimmune disease. I didn’t realize that I was in such good company though. Thank you for allowing me to share just a bit of my journey and hopefully give others a little hope with a positive outcome.
October 28th, 2008 at 5:55 pm
Great work.
March 15th, 2009 at 2:05 am
This advice is really going to help, thanks.