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!

10 Facts about Rheumatoid Arthritis (RA)

According to the Mayo Clinic, Rheumatoid Arthritis (RA) is an autoimmune disease that occurs when one’s body attacks the synovium (the lining of the membranes surrounding one’s joints). Read on to learn 10 interesting facts about this chronic autoimmune condition.

1. Joint pain is a hallmark of the disease

The John Hopkins Arthritis Center states that pain and swelling of the small joints—such as those in the hands and feet—is a hallmark symptom of the disease. However, any joint in the body can be affected by RA. Other than pain and swelling, the inflammation caused by RA can lead to stiffness, deformity, and even loss of function. Joint damage occurs in 80% to 85% of affected patients, with the majority of the damage occurring in the first two years of developing the disease.

2. RA doesn’t just affect the joints

Although joint pain is the most common symptom, RA affects more that just one’s joints. Other manifestations of the disease include eye inflammation, a low white blood cell count, subcutaneous nodules (skin lesions), fatigue and lung disease. What’s more, RA is known to be associated with a higher risk of lymphoma (a type of cancer), anemia (low iron levels), osteoporosis, and depression.

3. It puts patients at risk for death

Left untreated, RA increases one’s risk of mortality. The John Hopkins Arthritis Center states that untreated individuals with RA are twice as likely to die compared to unaffected individuals of the same age. Furthermore, RA can reduce life expectancy by 10 to 15 years.

4. It’s more common than you think

RA is in fact the most common type of autoimmune arthritis, affecting more than 1.3 million Americans. Approximately 75% of all RA patients are women, and 1-3% of the American female population is predicted to develop the disease over the course of their lifetime.

5. People of all ages can be affected

A common misconception of RA is that it’s an ‘old person disease’. Not true. The onset of the disease most commonly occurs in those ages 30 to 50; however, anyone of any age can develop the condition. Furthermore, juvenile rheumatoid arthritis, which occurs in those ages 16 and under, currently affects 50,000 children and youth in the U.S. alone.

6. There are other types of arthritis too

RA is mistakenly believed to only affect senior citizens, since it is often confused with osteoarthritis, which occurs when the protective cartilage that cushions the ends of your bones wears down over time. Other types of arthritis include psoriatic arthritis, ankylosing spondylitis, and gout. To learn more about each of these different types of arthritis, visit the John Hopkins Arthritis Center’s website.

7. There are multiple risk factors

Although the exact cause of RA is unknown, scientists believe that a combination of genetic and environmental factors may put individuals at a greater risk of developing the disease. Beyond being female and middle-aged, other risk factors include: having a family history of the disease, smoking, exposure to substances like asbestos or silica, and obesity.

8. There are a variety of treatment options

Rheumatologists often prescribe non-steroidal anti-inflammatory drugs (NSAIDs) to reduce the inflammation and pain associated with RA. Other prescription medications that treat RA include corticosteroids, disease-modifying antirheumatic drugs (DMARDs), and biologic response modifiers. Non-pharmaceutical treatment options include physical therapy, chiropractor treatment, and in some cases, surgery. To read more about these treatment options, visit the RA Support Network website.

9. The prognosis of the disease varies

Some patients with RA report only mild symptoms that place few limitations on their everyday lives. However, other patients experience significant pain and impact on their lives, including their ability to work. One of the main factors that predicts the disease prognosis is early detection. The earlier RA is identified, the sooner it can be effectively treated and joint inflammation and damage can be reduced.

10. There is hope

If you or a loved one has been diagnosed with rheumatoid arthritis, check out the American College of Rheumatology’s patient education videos to learn more about the condition. Additional patient and caregiver resources can be found on their website, including fact sheets, case studies and current news.

Thank you for stopping by Autoimmune Warrior. If this article was informative to you, please like, share, and comment below!

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Practicing Gratitude When You Have a Chronic Illness

Gratitude doesn’t change what we have in front of us; it changes the way we see what we have

Anonymous

This past Thursday was Thanksgiving here in the United States. I spent the day with my husband’s family and I couldn’t be more grateful to have them close by when I’m far away from my own family.

This got me thinking about practicing gratitude in general. How often do we really give thanks for what we have? Only once a year, when Thanksgiving rolls around? Or are we only thankful for what we have when we’ve lost it (in other words, when it’s too late)?

When you have an autoimmune disease or any other type of chronic illness, it can be challenging to feel grateful for what you have. I mean, how could I feel thankful for having near-constant joint pain, fatigue, widespread dryness, skin issues and brain fog, among other symptoms of Sjogren’s Syndrome and Hidradenitis Suppurativa (HS)?

But, if I challenge myself to think harder, I can actually think of many ways in which I should be grateful for what I have. Many people, especially those who are less fortunate or who live in developing countries, don’t have access to a reliable healthcare system, including adequate treatment options, necessary medications, and educated health care professionals. Even here in the United States, many people with chronic illness struggle to afford their medications, health insurance or co-pays for doctor’s visits. While I am by no means rich, I’m thankful that I have the ability to take care of my healthcare needs when many people cannot.

Another thing that I’m grateful for is the amazing chronic illness community that I’ve connected with in the past two years of blogging on this site. Having a chronic illness can sometimes be lonely, and you may feel like no one understands what you’re going through (especially if none of your family or friends have a disease themselves, or if you don’t have a satisfactory support system). However, by connecting with others on WordPress, Instagram and Reddit who are in a similar situation, I’ve quickly realized that I’m far from being alone, and I’ve learned new methods of self-care that have helped me manage my illness.

Thanks for reading this blog post! If you’re an Autoimmune Warrior, what are you thankful for (that you may have forgotten to be grateful about)? Comment below and let me know!

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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.

Endometriosis linked to common autoimmune diseases

Endometriosis image courtesy of: The Endometriosis Foundation of America

A group of Italian researchers based out of Sapienza University in Rome have discovered a link between endometriosis and several common autoimmune diseases.

According to the Endometriosis Foundation of America, endometriosis is a menstruation-related disease that primarily affects women in their reproductive years. The disease occurs when tissue similar to the endometrium (the lining of the uterus) migrates outside of the womb, where it shouldn’t be. This results in a variety of symptoms, including inflammation, severe cramping and pain, long, heavy periods, and infertility. It can also cause other symptoms, such as nausea, vomiting, bowel and urinary disorders, chronic fatigue and pain during sexual activity.

The exact cause of endometriosis is poorly understood. While many theories have been suggested, this study investigated the prevalence of common autoimmune diseases among Italian women with endometriosis. The study compared 148 women with endometriosis (the case group) to 150 who did not have the condition (the control group). The women in the study ranged from 18-45 years of age, and those who had endometriosis suffered from varying degrees of the disease.

The study found that in the case group, there was a ‘significantly higher’ prevalence of autoimmune diseases such as systemic lupus erythematosus (SLE), celiac disease, and Hashimoto’s thyroiditis, as compared to the control group not affected by endometriosis. Inflammatory Bowel Disease (IBD), however, was not found to be linked with endometriosis.

The main limitation of this study is the small sample size. Further studies must be done with a larger group in order to prove that autoimmune activity is responsible for the development of endometriosis. However, this study is helpful for physicians to consider the possibility of autoimmune conditions that may be co-occurring in patients with endometriosis.

To learn more about endometriosis, visit the Endometriosis Foundation of America website.

This blog post is dedicated to Jenni Rempel, a classmate of mine who passed away from endometriosis four years ago. Before she passed away, Jenni produced this video to educate others about this painful disease: Help Me Get My Life Back from Endometriosis.

How Chronic Illness Can Kill Your Self-Esteem

Chronic Illness and Self-Esteem

I recently read a post on Reddit on the r/autoimmunity subreddit titled ‘Losing Everything‘. In the post, the author describes being diagnosed with Sjogren’s Syndrome, an autoimmune condition affecting one’s moisture-producing glands. The author has also been living with other autoimmune diseases, including Graves’ disease, Hashimoto’s Thyroiditis and Granulomatosis with Polyangiitis (GPA), for quite some time.

She goes on to say that since being diagnosed with these conditions, she feels like she is losing everything that makes her ‘herself’. For example, she is an artist, but she has lost the use of her dominant hand as a result of her conditions, leading her to quit her art. She also had a unique style, with beautiful thick hair and piercings. However, most of her hair has now fallen out and she had to remove her piercings due to constant infections.

The author’s post made me think of my own struggle with chronic illness and how having Sjogren’s Syndrome, Hidradenitis Suppurativa (HS) and Benign Fasciculation Syndrome (BFS) has impacted my sense of self.

Although I have both good days and bad days, I often resent my body and these diseases for what they have ‘taken away’ from my life. I often think to myself, what would I have accomplished by now had it not been for this disease? Would I be further along in my career? My education? Would I have more social connections and deeper friendships? It’s hard to quantify, but I feel like my life would have been very different had I not developed autoimmune issues. In other words, I don’t feel like I can be my true ambitious self because of my chronic illnesses.

I could also relate to the author’s mention of her outward appearance, like her hair and piercings. I notice that I often think ‘why bother?’ when it comes to things like fashion and beauty, which were important to me before my diagnosis. I think this is because I’ve adopted the mindset that I am ‘diseased’, so why bother to look nice? This is definitely a negative mindset that I’m continuing to work on, but, I think it’s important to acknowledge how chronic illness can impact your sense of self- whether it’s your own self-image, or even your outward appearance.

I also recently read a powerful testimony on The Mighty by Megan Klenke titled, ‘How Chronic Illness Can Drastically Affect Your Self-Esteem’. In her post, she describes the shame that many individuals with chronic conditions and disabilities face, such as having to ask for help to do tasks that they once did independently, using a wheelchair, or dealing with embarrassing side effects of medications. Furthermore, Megan also points out that simple things like missing family functions or get-togethers with friends as a result of illness can make one feel left out and like an ‘awful’ family member or friend.

A YouTuber I follow named Samantha Wayne also created a video detailing her struggle with the impact of lupus on her self-image. She ended up being hospitalized and had to take time off to rest. During this time, she says she felt useless and like she wasn’t doing enough. Also, she had to step back from her job because being on her feet all day was taking a toll on her health. The medications she was taking, such as prednisone, also impacted her outward appearance.

Samantha did say that leaning on her support system has helped her to get through negative feelings about her self-worth. She also says that realizing that everyone is worthy, regardless of their health status, has also helped. Furthermore, she says that while her disease caused her to lose certain hobbies, like competitive basketball, she was able to adopt new hobbies and learn new skills such as video blogging on her YouTube channel, which she started in order to raise awareness about lupus. Finally, she says that practicing gratitude for the things she can do and what she has is another way that has helped to overcome her low self-esteem.

Has having a chronic illness impacted your self-confidence, and if so, how have you handled it? Let us know in the comments below!

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Top News in Autoimmune Disease – October 20, 2019

Evidence of autoimmune response in patients with autism

Autism impacts 1 in 59 American children by age eight and can seriously impair social skills and communication, and lead to repetitive behaviors and restricted interests. For the first time, a team of Boston, Massachusetts-based physicians and scientists have published a report detailing evidence of an autoimmune response against brain cells in patients with autism.

Matthew Anderson, MD, PhD, was the lead researcher in the study. His team analyzed brain tissues donated through Autism BrainNet, a non-profit tissue bank, and noticed that over two-thirds of the brains examined contained three uncommon characteristics.

Firstly, they noted the accumulation of immune cells surrounding blood vessels in the brain (called perivascular lymphocyte cuffs). Secondly, they found that there were bubbles or blisters (that scientists call blebs) accumulating around these blood vessels. Finally, upon further examination, they found that these blebs contained debris called astrocytes.

These findings are evidence of an autoimmune response and chronic inflammation in the brains of patients with autism. The scientists also compared the autistic brains to those of non-autistic donated tissues, and the presence of these findings in the autistic patients ‘significantly surpassed’ that of the control cases.

Although this study does not definitively prove that autism is an autoimmune disease, it is a first step in finding evidence of an immune response for this neurological condition. Anderson compared his team’s findings to research that multiple sclerosis (MS) is an autoimmune disease caused by the immune system’s destruction of the nerves’ myelin sheath.

To read more about this astonishing study, click here.

Family of woman with scleroderma seeks financial support

Yesenia Garica, 25, of Newhall, Santa Clarita, California, first began experiencing debilitating symptoms five years ago. However, it took years for her to get a diagnosis of scleroderma – an autoimmune condition that primarily affects the skin.

Symptoms of scleroderma include hardened and thickened skin, ulcers and sores on the skin, joint pain, muscle weakness, intolerance to cold, high blood pressure, blood vessel damage, and scarring of the lungs.

Yesenia has been hospitalized six times and had surgery three times this year alone. As a result, she now weighs a mere 74 lbs. Unfortunately, her health insurance does not cover the medication that she is taking to treat her symptoms. As such, her family has set up a GoFundMe campaign so that Yesenia can continue to take the medication and to cover specialized treatment at UCLA. So far, the campaign has raised $4,700 out of the $10,000 goal.

To learn more about Yesenia’s condition and to contribute to her GoFundMe campaign, click here.