10 Facts About Sjögren’s Syndrome

According to the Sjögren’s Syndrome Foundation (SSF), Sjögren’s is a systemic autoimmune disease that impacts the entire body, including the eyes, mouth, joints, nerves and major organs. In honor of World Sjögren’s Day, read on to learn 10 facts about this chronic autoimmune condition.

1. It is more common than you think

The SSF estimates that there are as many as 4 million Americans living with the disease, and it’s the second most common autoimmune condition. The exact prevalence of the condition is difficult to determine, however, since the symptoms tend to mimic those of other conditions, such as lupus, rheumatoid arthritis, multiple sclerosis, fibromyalgia and chronic fatigue syndrome. It can even be confused with menopause, allergies, and drug side effects.

2. It mostly affects women

The SSF states that nine out of 10 Sjögren’s patients are women, and the average age of diagnosis is the late 40s. However, the disease can impact anyone of any age, including men and children as well.

3. It causes extensive dryness

Sjögren’s Syndrome develops as a result of the body’s immune system attacking and destroying the body’s exocrine, or moisture-producing, glands. As a consequence, patients experience widespread dryness throughout their body, but especially impacting their eyes, nose, mouth, skin, vagina and joints.

4. It affects the eyes

The disease is often first detected as a result of eye-related symptoms. This includes dry, gritty eyes that feel like sandpaper when blinking and swollen tear glands. Dry eyes can in turn lead to blurred vision, infections, corneal ulcerations and blepharitis. Several of the eye tests that can be used to help diagnose the condition include a Schirmer test, to measure tear production, and a Rose Bengal and Lissamine Green test, to examine dry spots on the eye’s surface.

5. It affects the mouth, throat and nose

Sjögren’s also affects one’s mouth, throat and nasal cavity; the main symptom being dryness. This, in turn, leads to a whole host of other symptoms, such as mouth sores, dental decay, oral thrush (a yeast infection of the mouth), recurrent sinusitis, nose bleeds, heartburn, reflux esophagitis, and difficulty speaking and swallowing. Some physicians administer a lip gland biopsy as a part of the diagnosis process.

6. It impacts one’s joints too

As the immune system destroys the body’s moisture-producing glands, this results in a decrease in synovial fluid, which helps to keep the joints lubricated. This causes inflammatory joint pain and musculoskeletal pain, and can even lead to the development of rheumatoid arthritis, as shown through a positive Rheumatoid Factor (RF) reading in the blood. In fact, the main physicians who treat Sjögren’s are rheumatologists.

7. Neurological problems are also common

Sjögren’s causes a variety of nervous system symptoms, including nerve pain and peripheral neuropathy (a numbness and tingling in the extremities). Other neurological problems include difficulty concentrating and memory loss, often referred to as “brain fog”.

8. The prognosis of the disease varies

Patients may find that their symptoms plateau, worsen, or, uncommonly, go into remission. A French research study published in Rheumatology also found that early onset primary Sjögren’s Syndrome carried a worse prognosis over the course of the disease (‘early onset’ is defined as a diagnosis before age 35). While some Sjögren’s patients experience mild discomfort, others suffer debilitating symptoms that greatly impair their quality of life.

9. It can increase one’s risk of cancer

A German study found that Sjögren’s Syndrome moderately increases one’s risk of developing Non-Hodgkin’s Lymphoma (NHL). NHL is a cancer of the lymphatic system, which includes the lymph nodes, spleen, and other tissues. The lifetime risk of developing NHL by age 80 is 8% among men and 5.4% among women with Sjögren’s. This is compared to a risk of 1.6% of men and 1.1% of women in the general population.

10. There is hope

If you or a loved one has been diagnosed with Sjögren’s, check out the SSF’s video series, Conquering Sjögren’s, and their patient-published Self-Help Booklet. The foundation’s website, www.sjogrens.org, also contains a wealth of resources on the disease, including information about treatment options, survival tips, fact sheets, and even template letters for your health insurance company. You can also check out their extensive network of support groups.

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

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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.

3 Things Not to Say to Someone with a Chronic Illness

1. “Why don’t you just try exercising more and eating healthier?”

This is one of the most common questions I get asked when I first tell a friend that I have a chronic illness. And while it may be a well-intentioned question, the reality is, autoimmune conditions do not yet have a cure, and eating well and exercising is unlikely to make one’s symptoms dissipate.

While some patients may swear by a certain diet, such as going gluten-free, or adopting a particular exercise regimen, many others do not see a noticeable difference in their symptoms, despite extensive lifestyle changes. Also, such a sentiment often puts an unnecessary burden on the patient, who may feel like they ‘deserve’ their disease for not adopting ‘enough’ of a healthy lifestyle, when in fact, many scientists believe that there is a strong genetic component to autoimmune and other inflammatory conditions, which is beyond the patient’s control.

So please, the next time you think to tell someone to eat more kale to cure their painful rheumatoid arthritis- think again.

2. “Are you sure that’s what you really have? Maybe it’s just depression?”

When someone confides in you that they have a chronic health condition, they want to feel supported. The last thing they want is a friend or family member putting doubt into their mind about their health.

Furthermore, many patients go years from doctor to doctor seeking an answer about their health problems. When they finally get a diagnosis- although shocking and often devastating- there is a certain amount of relief that one experiences in at least knowing ‘what you have’ and the reassurance that what you’re going through is real. Asking someone “if they’re sure” about their condition, is essentially invalidating their health issues, right when that individual has finally found some closure.

Finally, asking if “it’s just depression” is simply unacceptable. Studies have shown that people with autoimmune conditions have a higher incidence of mental health problems such as depression. However, this shouldn’t be brushed off as “just” depression. Moreover, when I personally have been asked this question in the past, it made me think, ‘is this person saying it’s all in my head?’ This, in turn, made me more reticent about sharing health-related news in the future.

3. “It can’t be that bad, can it? You’re just exaggerating!”

For someone else to brush off your disease is the ultimate slap in the face. Many people with chronic health problems have an invisible illness, meaning that on the outside, they may look fine, but on the inside, they are suffering. Symptoms like chronic pain, organ and tissue damage, and fatigue are not usually noticeable to the naked eye.

Even health care professionals often don’t empathize with their patients’ complaints, telling them that they are exaggerating, or accusing them of being a hypochondriac. The result is that the patient may internalize their suffering, and not turn to their physician or loved ones for the medical help and support they need.

Unless you yourself have experienced the relentlessness of having a chronic condition, you can never know what someone with an invisible illness is going through. All you can do is listen and be there for them.

 

Did you like these tips on what NOT to say to someone with a chronic illness? If so, please like, share, and comment below!

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.