My favorite Autoimmune Disease YouTubers

Zach uses his platform on YouTube to share his story about ankylosing spondylitis

Zach from The Try Guys

Zach is best known for his work as a videographer for media giant BuzzFeed. During his time at Buzzfeed, Zach created a video about his struggle with an autoimmune disease called ankylosing spondylitis which received over 5 million views. In addition to having difficulty getting a diagnosis for his condition, Zach continued to struggle due to incessant back pain even after being diagnosed. He stresses the importance of being proactive with your treatment plan, no matter the severity of your symptoms. Check out his video below!

Zach’s video: I have an Autoimmune Disease

Live | Hope | Lupus

Samantha has been creating advocacy videos on chronic illness for the past 10 years. She created the YouTube channel Live Hope Lupus to create a space where those with chronic illnesses could get information and support. Samantha herself lives with the autoimmune conditions lupus, Sjogren’s Syndrome and autoimmune hemolytic anemia, as well as other related conditions, such as TMJ, costochondritis and Raynaud’s Phenomenon. She encourages others to subscribe to her channel to follow along with her journey. Check out her video below!

Samantha’s video: Lupus 101

Adamimmune

Adam started his YouTube channel two years ago after being inspired to share his story of healing. He has an autoimmune condition called Hidradenitis Suppurativa (HS), which affects hair follicles in the skin. After reaching stage 3 of the disease and experiencing significant pain, Adam implemented the Autoimmune Protocol (AIP) diet and found that his HS symptoms went into remission after three months. He is a big advocate for lifestyle changes in the treatment of autoimmune disease and shares his AIP recipes and grocery hauls on his channel. Check out his video below!

Adam’s video: Hidradenitis Suppurativa: Life Before Remission (My HS Story)

Surviving as Mom

Meredith, who goes by Meri, vlogs about her experience with an autoimmune disease called Sjogren’s Syndrome, which she says makes each day a little more challenging. She is an active stay at home mom with four sons, one of whom has various special needs. Meri’s channel contains many videos about her life as a stay at home mother, in addition to a Sjogren’s Syndrome video series. Check out her video below!

Meri’s video: Day in the Life with Sjogren’s Syndrome

Kalie Mae

Kalie recently started her YouTube channel in the hopes of being able to connect with other chronic illness sufferers. She discusses various autoimmune diseases and related conditions on her channel, including Fibromyalgia, Chronic Fatigue Syndrome, Sjogren’s Syndrome, Ehler’s Danlos Syndrome, Chron’s Disease and more. She is very candid in talking about chronic illness, including discussing the impact of her conditions on her mental health, career and relationships. Check out her video below!

Kalie’s video: Anxiety and Depression Chronic Illness Awareness

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Top News in Autoimmunity – Week of May 1, 2019

Carrie Ann Inaba Opens Up About Struggling with Fibromyalgia and Other Autoimmune Conditions

Carrie Ann Inaba shares emotional Instagram post about her struggles as an #AutoimmuneWarrior

Carrie Ann Inaba, world-famous dancer and judge on the reality TV show Dancing with the Stars, opened up to fans about her struggle living with multiple autoimmune and chronic health conditions, including fibromyalgia, Sjogren’s syndrome, rheumatoid arthritis, spinal stenosis and antiphospholipid syndrome (APL).

Carrie Ann shared that she has come to feel ashamed about her health issues, stating “I feel so much shame when I go through these things, because I want to be what people see. And people see a healthy person, from the outside.” On the positive side, Carrie Ann says that confronting her health issues has helped her to learn about who she is, besides being a “sexy dancer chick”. 

Carrie Ann says that despite the pain and other symptoms that she battles on a daily basis, she credits her improved health to staying active through practicing yoga and pilates, as well as seeking altnerative treatments like Craniosacral therapy, acupuncture and Reiki.

To learn more about her inspiring story, click here.

The Sjogren’s Syndrome Foundation (SSF) launches a new Exploring Sjogren’s video series

Sjogren’s Syndrome Foundation Launches YouTube Video Series

The Sjogren’s Syndrome Foundation (SSF) launched an informative new video series called Exploring Sjogren’s. The videos aim to discuss the complexities of living with the disease and the issues involved with conquering it.

The foundation says that the a new episode will premiere every Monday on their YouTube channel. To learn more about the video series, visit the SSF website by clicking here.

To view the first episode in the series, check out the Exploring Sjogren’s YouTube channel here.

Immune scavenger cells called histiocytes (in green) crowd around muscle fibres (in red), damaging them and causing muscle pain and weakness

Researchers Discover New Autoimmune Disease Causing Muscle Pain and Weakness

Researchers at the Washington University School of Medicine in St. Louis, Missouri have identified a new autoimmune disease that causes muscle pain and weakness.

Dr. Alan Pestronk, who leads the university’s Neuromuscular Disease Clinic and works as a professor of neurology, immunology and pathology, says that they have only observed four cases of the disease over the past 22 years.

Dr. Pestronk first observed the disease in 1996, when looking at microscope slides of muscle from a patient experiencing muscle pain and weakness. He noticed that immune scavenger cells called histiocytes that normally feed on dead material were crowded around injured muscle fibers.

He and his colleagues then encountered three more similar cases over more than two decades, each time analyzing detailed biopsies of the patients’ muscle tissue. The four cases discovered were enough to name a new autoimmune disease, large-histiocyte-related immune myopathy.

To learn more about the discovery of this autoimmune disease, click here.

Is there a link between diet and autoimmune disease?

About 8 years ago, I saw a powerful TedTalk by Dr. Terry Wahls, called Minding Your Mitochondria.

Dr. Wahls is a physician who was diagnosed with Multiple Sclerosis, a degenerative autoimmune disease affecting the body’s nervous system. After undergoing traditional therapies for the condition, including chemotherapy and usage of a tilt-recline wheelchair, Dr. Wahls studied biochemistry and learned about the nutrients that played a role in maintaining brain health.

After noticing a slow down in the progression of her disease after taking nutritional supplements, she decided to focus her diet on consuming foods that contained these brain-protecting nutrients. Only a year after beginning her new diet, Dr. Wahls was not only out of her wheelchair, but she had just finished her first 18-mile bike tour! She went on to develop a dietary regimen for those with autoimmune conditions, called the Wahls Protocol.

So, this raises the question, does diet play a role in the development of (and fight against) autoimmune disease?

There is evidence to suggest that there is a link between autoimmunity and one’s diet. For example, I recently wrote about a study published by NYU’s School of Medicine, in which researchers found that the autoimmune disease lupus is strongly linked to imbalances in the gut’s microbiome.

Furthermore, the Multiple Sclerosis (MS) Society of Canada also released a report detailing Vitamin D recommendations for MS patients, as a result of studies linking Vitamin D deficiency to the disease. Vitamin D is produced by our skin through sun exposure, but also comes from food sources such as fish, dairy and eggs.

Tara Grant, who has a condition called Hidradenitis Suppurativa (HS), an autoimmune condition of the skin, believes that there is a direct link between autoimmunity and diet, as a result of a concept called leaky gut syndrome.

Leaky gut syndrome, also known as intestinal permeability, occurs when the tight junctions between cells in the body’s digestive tract begin to loosen. This enables substances like bacteria, toxins and undigested food particles to enter your bloodstream. Consequently, your immune system reacts to attack these foreign substances, which leads to the development of inflammation and autoimmune disease.

After implementing a restrictive, dairy-free, gluten-free paleo diet, Tara has found that her HS symptoms have completely gone into remission. She now promotes the paleo lifestle on her blog, PrimalGirl, and even released a book, The Hidden Plague, which talks about her struggle treating HS through traditional means, and her journey to healing.

Now I’d like to hear from you Autoimmune Warriors- has changing your diet impacted your chronic health condition in any way? What changes have you implemented that have worked?

Learn More

To read more about the Wahls Protocol, check out Dr. Wahls’ website, and click here to get her book on Amazon.

To read more about Tara Grant’s journey to being HS-free, click here to get her book on Amazon, and check out her amazing gluten-free dough recipe, here.

April is Sjögren’s Awareness Month

Raise Awareness About Sjögren’s Syndrome by Sharing Your Story

April is Sjögren’s Syndrome awareness month! To raise awareness about this autoimmune disease, the Sjögren’s Syndrome Foundation (SSF) will be posting a daily story about someone affected by the disease on their social media platforms with the hashtag #ThisisSjogren’s. To participate in the campaign, fill out and submit the questionnaire at the following link along with a photo: https://info.sjogrens.org/conquering-sjogrens.

Here’s my questionnaire:

20190316_124525.jpg

Name: Isabel

Current age: 26

Age when diagnosed: 20

City/State: San Diego, California

How would you describe yourself in one word (teacher, graphic designer, stay at home parent): Marketing Coordinator

What are your top three most difficult symptoms to live with: Eye/mouth dryness, joint pain, fatigue

What is your most difficult symptom that people don’t understand: Brain fog – it’s an invisible symptom, and it’s hard to explain

What do you wish people knew about your Sjögren’s: 

That the condition involves the whole body, and it’s more than just eye and mouth dryness (and even those can be destructive symptoms).

What’s your best Sjögren’s tip:
Find a positive outlet in which you can discuss your disease – whether that’s a support group, talking with a loved one or keeping a journal. I write about Sjögren’s on my blog, autoimmunewarrior.org, and use it to connect with others who have the disease.

When your doctor doesn’t believe you

Have you ever complained to your family physician about your symptoms, only to be totally dismissed?

Whether you’ve been diagnosed with an autoimmune disease or not, your ailments may be ignored or written off as ‘not a big deal’ by a health care professional.

This has often happened to me over the course of the last 7+ years of having an autoimmune condition. For example, before I was even diagnosed with Sjögren’s Syndrome, I was told that my symptoms, including joint pain, eye and mouth dryness, recurrent ulcers, yeast infections, and fatigue had a plausible, non-disease related cause, and weren’t really a ‘big deal’ anyway.

Even worse, other health care professionals told me my symptoms were nothing more than a figment of my imagination.

Worse yet, after many unproductive visits to doctors’ offices and labs, with little to no explanation for what could be wrong, I actually started to believe…could I be imagining this?

One family MD, for example, told me my joint pain was probably a result of ‘texting too much’. As a fresh-faced teenager, I probably didn’t look like someone who could be experiencing debilitating joint pain. But that shouldn’t matter. In fact, juvenile rheumatoid arthritis, affecting those 16 years and younger, affects over 50,000 people in the United States alone.

Another time, I needed a referral to see a rheumatologist. The nurse who checked me in asked, “How does someone your age need a rheumatologist? Did you wear high heels too much in high school?” Not only was her questioning intrusive, rude, and uncalled for, it invalidated my experience as a patient with a chronic health condition.

As a result, I became even more reticent to explain my health issues with the people who I should be speaking with the most…health care professionals! And sadly, this is too often the experience for others living with autoimmune or other chronic health conditions.

The Sjgoren’s Syndrome Foundation recently shared a tip on social media, stating, “Remember that just because a symptom can’t be seen easily, it is still important. If you feel that a physician dismisses your Sjögren’s symptoms, help educate them and/or find another physician”. Many commenters responded by lamenting their own experiences with not being taken seriously by their healthcare providers. One woman commented, “My dentist keeps telling me to stop making excuses for my bad teeth”, referring to the fact that Sjögren’s often has a devastating impact on patients’ teeth, despite maintaining a solid oral hygiene routine.

If I had to give one piece of advice for anyone with chronic health problems, diagnosed or not, I would say to never give up. If your physician doesn’t take you seriously, move on. This doesn’t mean that you don’t listen to your doctor’s medical advice; this means that if they tell you it’s ‘all in your head’, or ‘it can’t be that bad, can it?’, and you know they are wrong, then you stand your ground.

Remember, you are the best advocate for your own health! Check out these helpful tips published by WebMD about talking to your doctor.

Top News in Autoimmunity – Week of Feb. 20, 2019

Lupus Strongly Linked to Imbalances in Gut Microbiome

Scientists at the NYU School of Medicine have discovered that systemic lupus erythematosus (SLE) is strongly linked to imbalances in the body’s gut microbiome.

The study showed that 61 women diagnosed with lupus had five times more Ruminococcus gnavus gut bacteria compared to 17 women who were healthy and did not have lupus. The study also showed that the abnormal levels of gut bacteria appeared to positively correlate with lupus ‘flares’, which are instances when lupus symptoms, such as joint pain, skin rashes, and kidney dysfuntion, increase dramatically.

Dr. Gregg Silverman, immunologist and one of the lead researchers in the study, commented, “Our study strongly suggests that in some patients bacterial imbalances may be driving lupus and its associated disease flares.”

Dr. Silverman also stated that the study may give way to new treatments for the disease, such as probiotics, fecal transplants, or dietary regimens that prevent the growth of the Ruminococcus gnavus gut bacteria. The study also discusses the role of ‘leaky gut’ in triggering the body’s autoimmune reaction.

To read more about the study, click here.

Immunology ‘Boot Camp’ Emphasizes the Role of Chronic Stress in Autoimmune Disease

Leonard Calabrese, Vice Chairman of rheumatic and immunologic disease at the Cleveland Clinic, emphasized the role of chronic stress in the development of autoimmune diseases during an immunology ‘boot camp’.

During his speech, Calabrese cited data that chronic stress compromised the body’s surveillance of pathogens. As a result, modern stressors, such as PTSD, major depression, and the stress associated with being a caregiver, which are chronic in nature, may trigger the pathogenesis of autoimmune disease. This is in contrast to acute stress, which comes in response to immediate dangers, ‘like our ancestors encountering a saber-toothed tiger’, states Calabrese.

The link between chronic stress and autoimmunity has given way to the development a several new therapies. For example, parasympathetic and vagal nerve stimulation are now in development to treat pain-related and autoimmune conditions, such as Rheumatoid Arthritis (RA) and fibromyalgia.

To read more about this research, click here.

Interested in reading more? See last week’s top news in autoimmunity here.