April is Sjogren’s Awareness Month; Read My Story

Hello Autoimmune Warriors! I hope you’ve all had a great start to April, despite the coronavirus pandemic that we all find ourselves in. April is actually Sjogren’s Syndrome awareness month, and as such, I wanted to share my own story battling this autoimmune disease here on the blog as well as on social media.

Name: Isabel

Current age: 27

Age when diagnosed: 20

City/State: San Diego, California

Please finish with the following sentence: “Since I was diagnosed with Sjögren’s, I have learned…”

…that self-care is extremely important when you have a chronic illness. After I was first diagnosed, I continued to push myself physically, academically and professionally the way I would have pre-diagnosis. But it’s really important to listen to your body and take it easy sometimes, even if that means it will take longer to accomplish your goals.

What are your most difficult symptoms?

Right now, joint pain, particularly in my hands, is my most challenging symptom. However, eye and mouth dryness, fatigue, and brain fog have been difficult for me as well.

How has Sjögren’s affected your life and how have you been able to effectively cope with the complexity of symptoms?

It takes me longer to accomplish tasks than it did before, due to chronic pain and fatigue. I have to go to the dentist a lot to take care of my oral hygiene, and I see different specialists for each of my symptoms. I also take various medications to cope with symptoms like dryness and joint pain. Other than taking medications, I cope with the symptoms by connecting with others living with the disease on social media and through my blog, autoimmunewarrior.org.

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

It’s not just dry eyes and mouth, and even those symptoms can be debilitating if they’re severe enough. This disease involves the whole body, and it’s a lot more than just a small ‘nuisance’, which is what it’s often portrayed to be.

Given recent global events amid the coronavirus/COVID-19, do you have any specific concerns because of Sjögren’s? 

As part of my treatment plan, I take immunosuppressant medication, which I’m afraid puts me at greater risk of not being able to fight off an infection, like COVID-19, if I were to catch it.

What’s your best Sjögren’s tip?

Find a team of medical professionals, including a rheumatologist and dentist, who are knowledgeable about Sjogren’s and have experience treating this disease specifically. Unfortunately, based on personal experience, I’ve found that few medical professionals are truly educated about the impact that Sjogren’s has on patients, so it’s important to connect with those that really understand the complexity of the disease and how it manifests.

Thank you for reading my story! If you’d like to learn more about how I was diagnosed with Sjogren’s, please visit the following article: My Struggle with Autoimmunity: Part 1.

If you’d like to share your own story, please visit the This Is Sjogren’s webpage on the Sjogren’s Foundation website to learn how you can be a part of the #ThisIsSjogrens awareness campaign.

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!

Related blog posts:

Carrie Ann Inaba Opens Up About Struggling with Fibromyalgia and Other Autoimmune Conditions; Sjogren’s Syndrome Foundation Launches YouTube Video Series; Researchers Discover New Autoimmune Disease Causing Muscle Pain and Weakness

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.