Video: Living with Autoimmune Diseases

Below is a video from the YouTube channel Our Grandfather Story (OGS), which raises awareness about overlooked stories across Southeast Asia. In this video, OGS interviews people with autoimmune diseases to ask them questions like, “Are you really sick?” “Can you be cured?” and “Should I pity you?” I found the video to be very relatable, especially as someone with an invisible illness, and I liked how they talked about some of the mental health impacts of chronic illness as well.

The participants in the video live with the following conditions: myasthenia gravis (MG), primary sclerosing cholangitis, autoimmune hepatitis, ulcerative colitis, autoimmune encephalitis, and lupus nephritis.

Thank you to OGS for raising awareness about autoimmune diseases; I hope my readers enjoy the video as much as I did!

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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!

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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