Top Autoimmune Disease Books to Read in 2020

Have you read any good books lately about autoimmune disease? I am continuously consuming autoimmune-related content, whether it’s blogs, YouTube videos or full-fledged novels. Read on to learn about my favorite autoimmune disease books that you should poke your nose into in 2020!

1. The Autoimmune Epidemic

The Autoimmune Epidemic by journalist Donna Jackson Nakazawa is a thought-provoking read about the potential causes behind many autoimmune conditions. In her book, Jackson Nakazawa theorizes that environmental factors such as pollution, pesticides and other toxins are responsible for the alarming rise in autoimmune diseases over the course of the last few decades. Although not a medical professional or scientist herself, Jackson Nakazawa provides compelling evidence that had me wondering what really triggered my own autoimmune conditions. The author herself has an autoimmune disease called myasthenia gravis that severely affected her mobility. Her book has received praise from numerous acclaimed individuals, including U.S. Senator and Secretary of State John Kerry.

2. An Epidemic of Absence

An Epidemic of Absence by Moises Velasquez-Manoff is another exploratory book about the causes behind autoimmune disease. His main theory is that autoimmune conditions, as well as allergies, are caused by a lack of actual communicable diseases in modern society. In ancient times, our ancestors had to contend with parasites and infectious diseases, like hepatitis A, measles, mumps and tuberculosis, from which they could easily die. However, our modern ‘too-clean’ environment has lead to our immune system attacking a new target – our own bodies – instead. I found that Velasquez-Manoff’s book was a direct contrast to The Autoimmune Epidemic (referenced above), since it posits that autoimmune diseases are caused by an absence of environmental triggers, rather than their presence. The author himself has alopecia universalis, an autoimmune disease that results in total body hair loss.

3. The Wahls Protocol: A Radical New Way to Treat All Chronic Autoimmune Conditions Using Paleo Principals

The Wahls Protocol by Dr. Terry Wahls is an excellent read. I first heard about Dr. Wahls when I watched her viral TedTalk video, Minding Your Mitochondria, in which she describes the relationship between the body’s gut microbiome and the development of autoimmune disease. In her book, Dr. Wahls, who has multiple sclerosis (MS), details how she went from being wheelchair-bound to competing in a marathon after adopting the principals of her dietary protocol. Before implementing the protocol, her MS continued to worsen, despite receiving excellent treatment from some of the top neurologists in the country. Dr. Wahls also stresses the importance of vitamin D naturally derived from the sun in order to maintain a healthy immune system. Although Dr. Wahls’ advice isn’t 100% proven, her medical background and own track record of success healing herself and others is certainly persuasive.

4. The Autoimmune Wellness Handbook

The Autoimmune Wellness Handbook is the first of several novels penned by Mickey Trescott and co-author Angie Alt. The focus of the book is about the Autoimmune Protocol (AIP), a dietary regimen that involves eating paleo, avoiding gluten and dairy, as well as numerous other foods that could ‘trigger’ an autoimmune reaction. I first read the book when I borrowed it from my local library; I had to wait to read the book though, since it was immensely popular, and I was number 25 on the waiting list! Since then, a family member gifted me with a follow-up book by Trescott, called The Nutrient-Dense Kitchen. The book is chock-full of great recipes that are AIP-friendly. Something I like about Trescott’s books is that they not only provide easy to follow recipes, but actually explain why it is that eating this way can help alleviate autoimmune symptoms for some people, including a deep dive into the science behind leaky gut. Trescott herself has both Celiac disease and Hashimoto’s Thyroiditis.

5. The New Sjogren’s Syndrome Handbook

The New Sjogren’s Syndrome Handbook was written by the Sjogren’s Syndrome Foundation (SSF) and edited by a physician familiar with the disease. What I like about this book is that it’s specific to Sjogren’s Syndrome (SJS), which is an autoimmune condition that I have. The book goes into the fundamentals about SJS, including what the disease is, how it is diagnosed, the main symptoms, complications, and treatment options. The one critique I would have for the book is that although it’s called the ‘New’ Sjogren’s Syndrome Handbook, the book was originally written in the 1990’s, so it’s not really new (though the foundation has come out with revised editions since). Overall, I think it’s a great read for a newly-diagnosed patient with Sjogren’s, or a family member/friend of someone with Sjogren’s, so that they can understand more about the disease.

Those are my top 5 autoimmune disease related books! Do you have any favorite novels related to chronic illness, autoimmune disease, or other health-related topics? If so, please share in the comments below!

Toddler’s Strep Throat Triggers Neurological Autoimmune Disease

Nate Kenoe, pictured above, developed a frightening autoimmune disease after strep throat

Nate Kenoe was a vibrant, energetic 4-year-old boy. Unfortunately, he had had a string of illnesses, testing positive for strep throat five times over the course of eight months. Each time, it wasn’t immediately clear that Nate had strep throat- oftentimes, he didn’t even have a sore throat! Instead, he presented with less common symptoms, such as bad breath or a sore on his butt. When he would finally get diagnosed with strep throat, he had to take a less effective antibiotic treatment, due to his allergy to penicillin.

Eventually, Nate developed even more disturbing symptoms that weren’t in line with strep throat. He began to have sensory issues, feeling pains in his feet as if he were walking on rocks, experiencing coldness in his shoulders, and other tics. He also had dramatically changed behavior, including vomiting at the sight of food, urinating multiple times an hour and banging his head.

Thankfully, an attentive pediatrician recognized Nate’s symptoms as pediatric autoimmune neuropsychiatric disorder associated with streptococcal infection, known as PANDAS for short. PANDAS is a little-known autoimmune disease primarily occurring in children between the ages of 3 and 12. With this disease, strep throat opens the blood-brain barrier, allowing abnormal immune cells to enter the brain and cause neuro inflammation. It has been compared to autoimmune encephalitis (AE), another autoimmune neuropsychiatric disorder.

The PANDAS network estimates that 1 in 200 children could have PANDAS; however, this autoimmune condition is often under-diagnosed or misdiagnosed due to its similarity with other conditions such as Tourette’s syndrome and Obsessive-Compulsive Disorder (OCD). Nate’s own mother, a pediatric nurse, hadn’t even heard of the condition before.

Nate received antibiotics, anti-inflammatory medications and had a surgery to remove his tonsils as a treatment for his PANDAS. As her son received treatment, his mother learned that PANDAS is in fact a controversial disease. Many physicians are skeptical that this autoimmune disease even exists, while others believe that there needs to be a standardized method for diagnosis and treatment.

One year later, Nate is faring much better than last year. However, if he gets sick, such as with a cold or virus, it will trigger another autoimmune ‘flare’ resulting in more sensory issues. Ultimately, Nate’s family hopes that by sharing his story, they can raise awareness about PANDAS, and in turn, help the disease get more research funding.

To learn more about PANDAS and Nate’s story, click here.

Pop Singer Sia Reveals Battle with Autoimmune & Other Chronic Conditions; Philippines Leader Rodrigo Duterte Says He Has Autoimmune Disease

Pop Singer Sia Reveals Battle with Autoimmune & Other Chronic Conditions

Pop singer Sia recently revealed in a Tweet that she is battling chronic pain as a result of an autoimmune disease and another genetic condition.

In the Tweet, Sia said, “Hey, I’m suffering with chronic pain, a neurological disease, [and] ehlers danlos and I just wanted to say to those of you suffering from pain, whether physical or emotional, I love you, keep going,” she wrote. “Life is fucking hard. Pain is demoralizing, and you’re not alone.”

Sia suffers from an autoimmune condition called Grave’s disease, which occurs when the body’s immune system attacks the thryoid gland. This results in hyperthyroidism, which is the overproduction of the thyroid hormone. Without treatment, the disease can result in heart problems like irregular heartbeat, blot clots, stroke, and heart failure, as well as eye health issues, like double vision, light sensitivity, eye pain and vision loss. It can even lead to thinning bones and osteoporosis.

In addition to Grave’s, Sia has Ehlers-Danlos Syndrome, a genetic condition and connective tissue disorder that can affect one’s bones, joints, skin and blood vessels.

Sia’s Tweet has garnered over 170,000 ‘likes’ on Twitter and has many fans responding with well-wishes and sharing their own experiences with chronic illness. One fan tweeted, “We love you so much Sia, you’re not alone either, please take care ❤ sending you lots of love and healing vibes.”

Her Tweet also draws similarities to Jameela Jamil’s Instagram message, in which she also revealed that she has Ehlers-Danlos Syndrome and another autoimmune disease called Hashimoto’s Thyroiditis, which causes hypothyroidism (the opposite of Grave’s Disease).

To learn more about Grave’s Disease, visit the American Thyroid Association.

Philippines Leader Rodrigo Duterte Says He Has Autoimmune Disease

The President of the Philippines, 74-year-old Rodrigo Duterte, says he suffers from an incurable autoimmune disease. The condition, called myasthenia gravis (MG), is a neurological disease that causes weakness in the skeletal muscles, according to the National Institute of Neurological Disorders and Stroke. The disease can also affect eyelid movements, facial expressions, talking, chewing and swallowing.

Myasthenia gravis occurs when the body’s own immune system attacks the neurotransmitter receptors on one’s muscles. This prevents the neurotransmitters responsible for muscle contraction from binding to nerve endings, thereby preventing muscle contraction. This results in the widespread muscle weakness that is the hallmark of this disease.

Duterte believes that he inherited the condition from his grandfather, who had myasthenia gravis as well. “One of my eyes is smaller. It roams on its own,” he said, according to a transcript released Sunday by his presidential office.

Although Duterte appears to be in relatively good health, and myasthenia gravis can be managed with treatment, about 20% of the people with the disease will experience a health crisis at some point in their lives.

To learn more about myasthenia gravis, visit the MG Foundation of America website.

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Seeking treatment for chronic illness: when desperation takes over

Allyson Byers was desperate to find a treatment that worked for her painful chronic skin condition.

I recently read an article by Self magazine about a young woman named Allyson Byers who suffers from a chronic skin condition called Hidradenitis Suppurativa (HS). According to the Hidradenitis Suppurativa Foundation, HS causes painful abscesses and boils to form in the folds of the skin, often around hair follicles, such as the underarms and groin. While the exact cause of HS in unknown, it is believed to be autoimmune in nature.

Although the condition isn’t actually rare, with about 1-4% of the general population affected, HS is often misdiagnosed as other conditions, like cystic acne. Patients also frequently don’t tell their physicians about their symptoms due to embarrassment, until they’ve reached stage 3 of the disease (at which point, surgery may be required).

Allyson was fortunate to have been diagnosed six months after the onset of the disease, as a result of a knowledgeable family physician who recognized the tell-tale symptoms. She then went on to see a dermatologist, who prescribed a variety of treatments, from antibiotics, to diabetes medication, hormone-suppressing drugs and even immunosuppressants. But nothing seemed to quell the prognosis of the disease, and eventually, Allyson found herself in so much pain, she couldn’t even raise her arms or even walk, due to the abscesses in her underarms and groin. It even affected her sleep.

Needless to say, she was desperate for a cure- or at least a treatment. Allyson said that in her desperation, she turned to alternative medicine to help. She tried everything from special diets, like the autoimmune protocol (AIP), to supplements and topical solutions (like turmeric, tea tree oil and special soaps). She even saw a chiropractor for a controversial diagnostic test called applied kinesiology, which involves exposing oneself to potential allergens and measuring changes in muscle strength. She spent thousands of dollars on unproven ‘treatments’ in her quest to reduce her painful symptoms.

I know all too well what it’s like to be Allyson—I have HS myself. Unlike her, however, it took six years for me to get a diagnosis (the doctors I had seen in Canada hadn’t even heard of the disease). Before I got diagnosed, I was so desperate for a cure that I purchased different creams, salves and ointments online, that had no medical proof, but that claimed to ‘cure’ my symptoms. One of the salves I bought caused a horrible burning sensation on my skin; another, an oil made out of emu fat (I’m not joking!), did absolutely nothing other than make my skin oily. Some of these so-called ‘treatments’ may have even made my condition worse.

Several members of my family, who are big proponents of alternative medicine, even brought me to a naturopath in the hopes of combating my Sjögren’s Syndrome symptons. I followed various different diets to no avail, took all types of unproven supplements, and even tried chelation therapy, which involves the intravenous administration of drugs to remove heavy metals from the body (this can even result in death). Although I am not against exploring alternative treatments and making lifestyle changes, none of these treatments improved my condition, and they cost even more than science-backed methods.

Like Allyson, I am tired of always trying to ‘chase’ a new treatment, scientific or not, in the hopes of finding a cure. Although I will never truly give up, I would urge others suffering from chronic illnesses not to get desperate; or at least to not allow your desperation to cloud your judgement. If you’re going to try an alternative therapy, at least run it by your physician first, so that you can ensure it’s safe before testing its effectiveness.

Have you had any success treating your condition with alternative medicine? Comment below!

Related blog posts:

iMD Partners with the American Autoimmune Related Diseases Association (AARDA); Is There a Connection Between Adverse Childhood Experiences (ACE) and Autoimmune Disease?

iMD Partners with the American Autoimmune Related Diseases Association (AARDA)

On July 17, 2019, iMD Health Global, a Toronto-based health technology company, announced that it has formed a strategic partnership with the American Autoimmune Related Diseases Association (AARDA). The partnership will help enhance communication between physicians and autoimmune disease patients to improve health outcomes.

iMD Health provides revolutionary technology to facilitate dialogue between physicians and patients inside the examination room. The iMD platform enables healthcare professionals to instantly access thousands of educational graphics, videos and resources at the point of care. The company’s platform is currently being used across Canada, and is now expanding across the United States as well.

Virginia Ladd, Executive Director & President of the AARDA commented, “With iMD, quick and easy access to a robust and visually appealing resource is now literally at the physician’s fingertips. With a better understanding of their conditions, patients can make informed and responsible decisions about managing their health and the required steps to address their condition.”

To read more about this exciting new partnership, click here.

Is There a Connection Between Adverse Childhood Experiences (ACE) and Autoimmune Disease?

Dawn Debois, a columnist on Lambert-Eaton News, explores the relationship between Adverse Childhood Experiences (ACE) and the development of autoimmune disease.

Debois has several autoimmune conditions herself, including Lambert-Eaton Myasthenic Syndrome (LEMS), psoriatic arthritis, Hashimoto’s thyroiditis, and ankylosing spondylitis. These conditions lead to her being diagnosed with multiple autoimmune syndrome.

Debois believes that the early childhood trauma that she experienced from losing her mother before the age of five and being placed into foster care may have triggered the onset of these autoimmune conditions. She completed a questionnaire that revealed that she had an ACE score of four, which is considered high, and is a high predictor of diagnosed autoimmune disease in adulthood, according to this study.

She further discusses the prevalence of the protein HLA-B27 in her blood, which can lead to a higher risk of developing certain autoimmune diseases. Therefore, while early childhood trauma may be an environmental factor affecting the pathogenesis of autoimmune disease, there are genetic factors as well.

To read more about Deb’s story and the link between Adverse Childhood Experiences (ACE) and autoimmunity, click here.