How a 71-year-old man got diagnosed with Autoimmune Encephalitis (AE)

Robert Given was a 71-year-old Accountant who ran his own CPA firm and was heavily involved in his local community. Although he didn’t have any prior history of autoimmune disease, he suddenly found himself impacted by a severe autoimmune condition.

While dining out with friends, Given suddenly slumped over, had a seizure, and urinated on himself. Restaurant patrons helped him to lay on the floor and called an ambulance. By the time the ambulance arrived, he had regained consciousness but was confused, refusing to step into the ambulance until his wife told him to.

After being evaluated by a number of physicians, including an internist and a neurologist, the medical professionals made several interesting discoveries. Given had had a sudden drop in blood pressure that was uncharacteristic for someone with well-controlled high blood pressure like himself. His wife also reported that he was losing his balance, had difficulty sleeping and sometimes had slurred speech. He was also highly talkative, to the point that it appeared to be logorrhea – a constant need to talk, even if the speech is often incoherent and repetitive.

Given had a second seizure, and was once again transported to the hospital. After this second episode, his doctor pondered what condition could possibly cause a sudden onset of both neurological and psychiatric symptoms. He hypothesized that his patient might have either Multiple Sclerosis (MS), or some type of heavy metal toxicity and ordered a round of tests to see if this was the case.

The tests came back negative for MS and heavy metals, and his medical team thought that they had to go back to the drawing board. Suddenly, however, his internist Dr. Hersch realized that he had seen a similar case several years prior; the patient had died, but his test results had revealed that he had autoimmune encephalitis (AE), a group of conditions in which the immune system mistakenly attacks the brain.

Dr. Hersch ordered a new round a tests that confirmed that Robert Given did indeed have a type of autoimmune encephalitis caused by a rogue antibody called CASPR2. Symptoms included fluctuations in blood pressure and heart rate, loss of balance, insomnia, and personality changes, and the majority of patients were men over the age of 65- just like Given!

Given has been receiving treatment for his condition at the Mayo Clinic for the last three years. Due to the difficult nature of this disease, his recovery is slow, but he is relieved to have been diagnosed in time to receive life-saving medication.

The Autoimmune Encephalitis Alliance says that while Given is lucky to have received a diagnosis, their aim is to raise awareness so that others with AE do not have to rely on luck to determine the outcome of the disease.

To read the original story by Dr. Lisa Sanders from the New York Times, click here. Also, check out this trailer for Brain on Fire, a movie based on a real-life story of a woman with AE.

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Top News in Autoimmune Disease – June 1, 2019

Dr. Dale Lee is the Director of the Celiac Disease Program at Seattle Children’s Hospital

Youth Take On Celiac Disease Through Outreach Program

Last month was Celiac Disease Awareness Month. While Celiac is one of the most common autoimmune diseases, experts at the Seattle Children’s Hospital estimate that for every diagnosis, eight cases are overlooked.

As a result, the hospital has put together an outreach program that allows youth with Celiac disease the opportunity to raise awareness, organize support groups, and mentor other youth with the disease.

There are currently 11 youth members on the Celiac Youth Leadership Council (CYLC), and one of their current initiatives is running a gluten-free food drive for a local food bank.

The most common symptoms of Celiac disease include abdominal pain, diarrhea, constipation, weight loss, nausea, and fatigue. Other symptoms include anemia, joint pain, arthritis, osteoporosis, peripheral neuropathy, seizures, canker sores, skin rashes, fatigue, depression and anxiety. In children, the disease can also cause irritability, stunted growth, delayed puberty, and dental damage.

To learn more, click here.

Asaya Bullock (left) pictured here with his sister, is in grave need of a bone marrow match

7-year-old with Rare Autoimmune Disease Needs Life-saving Bone Marrow

Asaya Bullock, a 7-year-old boy from New York, is searching for a donor willing to donate matching bone marrow.

Asaya was born with a rare, life-threatening autoimmune disease called IPEX syndrome. Symptoms include joint pain, body aches, memory loss, fatigue and stomach problems. Doctors said he had two years to live, but, miraculously, he is still alive seven years later.

A bone marrow transplant would greatly help Asaya’s condition; however, since he is of mixed ancestry (part African part Caribbean), finding a matching donor is proving to be a challenge. According to Be the Match, an organization that operates the world’s largest bone marrow registry, the more genetically diverse an individual is, the more difficult it is to find a matching donor.

To learn more about Asaya’s story and how you can join the Be the Match registry, click here.

Monique Bolland describes her harrowing journey living with Multiple Sclerosis (MS)

Australian Woman Describes Her Journey with Multiple Sclerosis

Monique Bolland, 36, from Australia, shares her story living with Multiple Sclerosis (MS).

Bolland was first diagnosed with this incurable autoimmune disease when she was just 22. At the time, she didn’t quite comprehend the severity of her diagnosis.

She says that she first realized how bad her MS symptoms were when she was cutting bread and accidentally cut her hand, but didn’t even notice as a result of the nerve damage and numbness caused by the disease.

MS impacts an estimated 2.5 million people worldwide, and 70% of MS patients are female. Symptoms include impaired motor function, numbness, fatigue, heat sensitivity, optic nerve damage, and more.

Bolland says that living a healthy lifestyle is imperative to managing her MS symptoms. This includes consuming a diet rich in vitamins D, B12 and omega-3 fatty acids, reducing stress and inflammation, and staying active. She also gets monthly injections of Tysabri, an immunosuppressive drug. In addition, she launched a nutrition supplement and health product line called Nuzest with her father, which supports MS research.

To learn more about Bolland’s story, click here.

Actress Nicole Beharie reveals autoimmune disease caused her exit from hit show

Actress Nicole Beharie Exits Show due to Autoimmune Disease

Nicole Beharie, famed actress on Fox’s hit show, Sleepy Hollow, confessed to fans on Instagram that she left the show abruptly as a result of an autoimmune disease she has been keeping secret for the last five years.

Although Beharie didn’t reveal the exact autoimmune condition she has, she states that it caused her to experience skin rashes and fluctuations in her weight. As a result, her character on the show, FBI agent Abby Mills, was killed off in the season 3 finale, allowing her to take a much-needed break for her health.

Beharie says setting boundaries and limitations, as well as changing her diet, were key to improving her physical and mental state.

To read more about her story, click here.

Travis Frederick missed an entire NFL football season as a result of his autoimmune disease

Dallas Cowboys Frontman Tackles Autoimmune Condition and Injuries

Travis Frederick, the Dallas Cowboys’ all-star center, revealed that he suffers from an autoimmune condition called Guillain-Barre syndrome. This caused him to miss playing an entire NFL football season, while a backup played in his place. He also revealed he had two surgeries during this time.

Frederick is now expected to return to the starting lineup this upcoming season. However, since he is still experiencing lingering effects of Guillain-Barre, he is being brought back on to the field slowly.

To learn more about Frederick’s story, 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.

Top News in Autoimmunity – Week of Dec. 19, 2018

NMO

Edmonton fighter diagnosed with rare disease

Victor Valimaki, a 37-year old professional fighter from Edmonton, Alberta, Canada, was left crippled by a rare autoimmune disorder.

Although Valimaki has fought in over two dozen professional fights, leading him to a successful career as an Ultimate Fighting Championship (UFC) mixed-martial arts fighter, he was recently diagnosed with neuromyelitis optica (NMO), otherwise known as Devic’s disease.

This autoimmune condition affects the body’s optic nerves, spinal cord and brain. For Valimaki, the disease caused him to lose his vision, speech, and ability to walk. Although he has since regained his sight, he is still struggling with the other consequences of the disorder.

Read his full story and watch the video on CTV News Edmonton.

Italian biotech company raises 17M€ to fund gene therapies for autoimmune diseases

An Italian biotechnology company named Altheia raised over 17 million euros this week to fund gene therapies that could potentially treat many incurable autoimmune diseases.

The company’s technology, which uses gene therapy to engineer bone marrow stem cells to express a molecule called PD-L1 that inactivates the immune system’s T cells. In other words, the molecule released will ‘hit the breaks’ on the body’s immune system, avoiding an immune system attack on healthy tissue.

Paolo Rizzardi, the company’s CEO, has stated that he expects clinical trials for autoimmune conditions such as multiple sclerosis and type 1 diabetes to begin in 2021.

Read more about this exciting new development on LABIOTECH.eu.

 

 

 

Top News in Autoimmunity – Week of Dec. 5, 2018

Sjogren’s non-profit seeks applicants for research grants

The Sjogren’s Syndrome Foundation (SSF) is now accepting applications for research grants. Two distinct awards are being offered: the SSF Pilot Research Award for $25,000 and the SSF High Impact Research Award for $75,000. To view more details and apply, see the SSF website.

Trump administration proposes access barriers to drugs critical to autoimmune patients health

The American Autoimmune Related Diseases Association (AARDA) reports that the Trump administration has proposed a Medicare rule that allows for step therapy and prior authorization restrictions. The AARDA states that such a rule would interfere with the patient-physician relationship, and can result in delayed treatment, increased disease activity, loss of function, and potentially irreversible disease progression for Medicare beneficiaries. Read more here.

Sharing the Journey series provides tips on explaining lupus

The Lupus Foundation of America has published a blog series Sharing the Journey to highlight the perspectives and personal experiences of those who struggle with lupus each day. In the series’ latest installment, contributors describe how they explain lupus to family, friends, co-workers, and others. Read their compelling stories here.

MS Society of Canada launches Vitamin D recommendations for MS

The Multiple Sclerosis (MS) Society of Canada has released a report detailing Vitamin D recommendations for those living with MS for at-risk populations.

Vitamin D, dubbed the ‘sunshine vitamin’, is produced by our skin through sun exposure, but can also come from other sources such as food (eggs, fortified dairy products, and fish) and supplements. The Society has long funded research on the relationship between Vitamin D levels and MS. The recommendations have been summarized into two reports; one for researchers and healthcare professionals, and another for laypersons. Read more under the Society’s research news.

5 Celebrities with Autoimmune Diseases

Did you know that the following celebrities have autoimmune diseases? Unfortunately, being an A-lister does not exempt you from having health problems. Read on to learn about their powerful stories of hope and living with chronic illness.

1. Selena Gomez

Selena Gomez.jpg

In 2015, it was revealed that Selena Gomez suffered from Lupus, an autoimmune condition that causes the body to attack its own vital organs, skin, joints and other tissues. Selena also disclosed that she was undergoing chemotherapy as part of her treatment.

Her life took a dramatic turn in 2017, when her doctors advised that she would need a new kidney. Thankfully, her best friend, Francia Raisa, generously donated her own kidney to Selena, undergoing an intensive, 6-hour organ transplant surgery. Although the surgery seems to have had a positive impact on Selena’s physical well-being, she admits that Lupus has also taken a toll on her mental health, causing her to experience depression, panic attacks and anxiety. She has become an advocate for Lupus awareness, and was co-chair at the 2017 Lupus Research Alliance Gala.

2. Venus Williams

Venus Williams.jpg

Tennis all-star Venus Williams shocked the world in 2011 when she revealed that she had been diagnosed with an autoimmune condition called Sjogren’s Syndrome. Sjogren’s primarily affects the body’s moisture-producing glands, resulting in symptoms such as dry eyes and mouth, severe fatigue, and joint pain.

Venus attributes the disease to taking longer to recover from injury, and was forced to withdraw from the U.S. Open in 2011 due to her symptoms. However, she believes in a “never give up” mentality, and has adopted a vegan diet to improve her overall health. Venus also became an Honorary Chairperson for the Carroll Petrie Foundation Sjogren’s Awareness Ambassador Program to raise awareness about the disease.

3. Jack Osbourne

Jack Osbourne

Jack Osbourne, son of heavy-metal singer Ozzy Osbourne and reality TV personality Sharon Osbourne, was devastated to learn that he had been diagnosed with Relapsing-Remitting Multiple Sclerosis in 2012.

Multiple Sclerosis (MS) is an autoimmune disease of the nervous system, and can result in a diverse range of symptoms, from mobility and speech issues, to pain and even blindness. Jack revealed in an interview that he was diagnosed with MS after noticing a black dot in his vision, that turned out to be optic neuritis, an inflammation of the eye nerves that resulted in 90% blindness in his right eye. Despite the diagnosis, Jack is determined to live a fulfilling life, and has partnered with a neuroscience organization to create the international campaign “You Don’t Know Jack About MS” to raise awareness about the disease.

4. Wendy Williams

Wendy Williams

Wendy Williams shocked viewers when she fainted on live TV during an airing of her daytime talk show, Wendy. When she returned after a three-week, doctor-ordered hiatus, Wendy revealed that she had been diagnosed 19 years prior with Grave’s Disease, which may have contributed to her fall.

Grave’s Disease is an autoimmune condition that affects the thyroid gland. Symptoms are varied, but may include hyperthyroidism (overactive thyroid), bulging of the eyes, heart palpitations, weight loss, and fatigue. During a segment with Dr. Oz, she discussed her struggle with the condition, and has used her platform to raise awareness for the disease.

5. Winnie Harlow

Winnie Harlow

24-year old model Winnie Harlow rose to fame at a young age as a contestant on Tyra Banks’ reality TV show, America’s Next Top Model. The Canadian model revealed that growing up, she had been a victim of vicious bullying due to having a chronic autoimmune skin condition called Vitiligo, which causes the destruction of melanocytes, resulting in a depigmentation of the skin.

Winnie did not allow her autoimmune condition to stop her modelling career, however, and has modeled for international brands such as Desigual and Swarovski. She has become an outspoken advocate for self-love, presenting a TedxTalk on the topic and participating in Dove’s Real Beauty campaign.