Sjögren's FoundationApr 28, 2025

Sjögren's is a serious, systemic, and complex disease that is still under recognized. 79% of Sjögren's patient say living with Sjögren’s makes every day a challenge. Despite that, 69%

say they are still able to live a fullfilling life despite their disease.

#ThisIsSjögrens

Sjögren's FoundationApr 25, 2025

Debra

'I will say this, through counseling, I learned that I am morning my former life and trying to navigate my new life with Sjögren’s.

Thankfully my spouse is an Optometrist. I didn’t even know what Sjögren’s was. When I was diagnosed it was the first time I heard of it. My husband knew all about it. He is very supportive and has treated Sjögren eye related issues for years. He also knows the struggles patients endure trying to get the right diagnosis. He has actually related to me that on a particular day that he had a patient that sounded exactly like me, trying to navigate all of the symptoms and just find the right combination of therapies to get relief and try to lead as best of a normal life as possible.

Take a breath … this disease is chronic. It is manageable. Listen to your body, you now have limitations. Over doing or over stressing will lead to symptom onset. Educate those that are closest to you. Print the human body diagram that the Sjögren’s Foundation has on their site. Give it to everyone that you think needs education about the disease. It is a systemic disease, that seems to have a mind of its own. You never know when it will affect a body's systems. Seek a good Rheumatologist, one versed in Sjögren’s. Understand your PCP is most likely limited in their knowledge of the disease. You may be tasked with educating them as well. I learned, in case this disease has debilitated you, that it is recognized by Social Security as a disability. Lastly, you are not in this alone, seek support, whether it be counseling, support groups, education is also key. You are not a hypochondriac your symptoms are real!'

To learn more of Debra's story click the link below:

https://sjogrens.org/awareness-stories

#ThisIsSjögrens

Beyond Sjögren'sApr 24, 2025

What is really possible when it comes to improving health and symptoms with Sjögren's?

Over the past few years, we’ve had the privilege of supporting dozens of people with Sjögren’s - and we’ve seen firsthand that while there’s no quick fix, progress is absolutely possible.

In this post, we’re sharing 5 key lessons that we have learned from those who have seen meaningful improvements to their health and symptoms, so you can take these insights and apply them to your own journey too.

⬆️ Tap through to learn what has helped others feel better with Sjögren’s, and how it might help you too.

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💡 Want to learn more?

We have launched a course to help people with Sjögren’s improve their health, through Sjögren’s-specific diet, supplement, movement, stress and sleep recommendations and much more.

Follow the link in bio or comment 'COURSE' for more.

Use code "awareness10" at checkout for 10% off the course price. Available until the end of April.

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Sjögren's FoundationApr 17, 2025

Barbara

'I was diagnosed with Sjögren’s in my mid forties soon after I began to experience dry eyes and mouth as well as fatigue. At age fifty I experienced forced retirement from my position as a registered nurse because I had used up all of my paid time off after surgery for back to back rotator cuff repairs. Other physical issues related to Sjögren’s over the years had also eaten into my accumulated sick leave benefits. My position in a large medical school as an RN in the Dept. of pediatrics for 32+ years came to an abrupt and sudden end mandated by HR. No problem they said. You can draw short term disability then file for SSDI. You’ll be fine. Have your office cleaned out by 5:00 today! I was not able to fight back the tears. Emotionally I was devastated after a long career filled with knowledge that still needed to be shared for the well-being and care of babies born prematurely and their parents who needed training on how to care for them. At age 50, I had a lot left to give but Sjögren’s and the prevailing culture that anyone with a disability is a company liability and waste of resources, cut that short. I didn’t know what to do with my time and I had to begin to redefine myself. It took a major toll on my self esteem and I felt somewhat worthless and depressed. To this day, I just turned 72, I still have unresolved feelings of disappointment and resentment to deal with.

I wish my loved ones and friends could truly understand what I go through every single day of my life. I never feel fully rested and it’s frustrating to have to acknowledge my limitations and to miss out on activities because I’m just too darn tired. I wish they truly understood that my whole body is affected by this disease and that I often hide how I feel because frankly I loathe being a complainer. I hate relying on others for help when I was always the one everyone depended on at home and at work when someone else was in need.'

Click the link below to read more of Barbara's story:

https://sjogrens.org/awareness-stories

#ThisIsSjögrens

Sjögren's FoundationApr 21, 2025

A number of different medications are available that can be used to manage symptoms. Currently, no single medication has been conclusively proven to slow the progression of Sjögren’s or treat all aspects of the disease.

On average, respondents to our 2021 Living With Sjögren's Patient Survey use 3.7 OTC products, 3.3 prescription products and see 4.4 health care providers, annually.

However, 23% of respondents reported using 10+ medications and seeing 6+ health care providers.

#ThisIsSjögrens

Beyond Sjögren'sApr 22, 2025

Have you noticed the air quality in your home affecting your Sjögren's symptoms?

Our homes can be a significant source of indoor air pollution, and contribute to increasing inflammation.

The good news is you can easily address this. Swipe to learn how!

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Want to learn more?

Our new course teaches you how to reduce your toxic load with Sjögren’s, so you can reduce your inflammation and improve your health.

We have 48 hours left for 10% off the course price - use code "awareness10" at checkout.

Follow the link in bio or comment 'COURSE' for more.

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Sjögren's FoundationApr 10, 2025

Brain Fog is a lay term to describe fluctuating mild memory loss that is inappropriate for a person’s age. It may include forgetfulness, spaciness, confusion, decreased ability to pay attention, an inability to focus, and difficulty in processing information. Remember that gradual cognitive decline from early adulthood is a fact of life. Brain Fog can occur in Sjögren’s, but other factors might cause these symptoms and should be considered by you and your doctor.

According to the Livivng With Sjögren's Patient Survey, 80% of Sjögren's patients experience Brain Fog.

For more information on Brain Fog and other symptoms, click the link below:

https://sjogrens.org/understanding-sjogrens/resources/brochures-resource-sheets

Sjögren's FoundationApr 14, 2025

An estimated 70% of Sjögren's patients have at least one other immune related health condition in addition to their Sjögren's. An estimated 49% of patients have two or more conditions. These conditions can include but are not limited to:

- Fibromyalgia

- Rheumatoid Arthritis

- Hashimoto’s Hypothyroidism

- Mixed Connective Tissue Disease

- Systemic Lupus Erythematosus (SLE)

- Celiac Disease (gluten enteropathy)

- Graves’ Disease

- Scleroderma

#ThisIsSjögrens

Beyond Sjögren'sApr 15, 2025

Does your skin get dry and irritated after using certain skin-care products?

It's no surprise! So many of the cosmetics we use are full of irritating, and sometimes even toxic, ingredients (yes, even the expensive ones!).

Let's break it down.

🚫 The worst offenders for dry and sensitive skin are:

- Alcohols (including ethanol, denatured alcohol, isopropyl alcohol): they strip moisture from skin and cause irritation. Cetyl and stearyl alcohol are usually ok.

- Fragrance / parfum: even if they are labelled as 'natural', they are common triggers for skin irritation, and are also endocrine (hormone) disruptors.

- Sulfates (sodium lauryl/laureth sulfate, or SLS): strip natural oils from the skin and make dryness worse.

- Parabens: also endocrine disruptors, and can make inflammation worse.

- Essential oils in high doses: can cause irritation in sensitive skins.

- Petrolatum and mineral oils: although they moisturise skin in the short term, they can block pores and prevent the skin from breathing (which isn't great for inflamed skin).

- Retinoids (retinol, tretinoin): also very drying and irritating.

- Waterproof mascaras, harsh removers, eyeliners with glitter or strong pigments: can migrate into the eye and cause irritation.

✅ Better alternatives:

- Fragrance and alcohol-free products.

- Gentle cream or oil-based cleansers.

- Moisturizers with ceramides, hyaluronic acid, squalane and/or shea butter.

- Products labelles as eye-safe and ophtalmologist-tested.

- Non-toxic lip balms without strong menthol or camphor (can dry out lips).

- Bakuchiol as a natural, gentler alternative to retinols.

💡 Want to learn more?

Our "Healing with Sjögren's Naturally" course contains a whole in-depth lesson on environmental toxins, their effect on Sjögren's, and how to easily avoid them, including useful apps and resources that will make your life easier.

Comment "COURSE" and we will send you more info!

Sjögren's FoundationApr 01, 2025

Sjögren’s disease is one of the most prevalent yet underrecognized autoimmune diseases, affecting millions of people worldwide. Despite its impact, awareness remains low, and many patients experience delays in diagnosis and a lack of treatment options.

This month, we invite you to Connect, Learn and Thrive. Connect with the Sjögren’s community,

Learn more about the disease and ways to bring awareness to its impact, and Thrive by accessing resources and support that empower you to live your best life with Sjögren’s.

Click the link below to learn more about Sjögren's Awareness Month:

https://www.sjogrens.org/sjogrensmonth

#ThisIsSjögrens

Sjögren's FoundationApr 03, 2025

Sjögren's is a complex disease and can be difficult to diagnose, and it's not uncommon to face challenges along the way. If you feel like something isn't right, continue to advocate for yourself and be persistent in your search for answers.

Currently, the two most prevalently used tests to clearly diagnose Sjögren’s are testing positive on a lip biopsy and testing positive for a prominent autoantibody associated with Sjögren’s known as anti-SSA (also called anti-Ro). However, an estimated 40% of Sjögren's patients are considered 'Seronegative', meaning they are not positive for anti-SSA, despite having clear indications of having Sjögren's disease.

Beyond Sjögren'sApr 01, 2025

April is Sjögren's Awareness Month, and we want to take this opportunity to bring awareness to the challenges that people with Sjögren's suffer with:

👉 What is Sjögren's?

Sjögren's is a relatively common autoimmune disease that is most commonly known for damaging moisture producing glands - like tear and saliva glands - causing severe dry eyes and/or mouth.

However, the disease often impacts far more these glands, and can affect the whole body, causing deilitating fatigue, digestive issues, joint and nerve pain, brain fog and more.

👉 How does it affect those who suffer with it?

- They often live with a deep exhaustion that doesn’t improve with rest and can make even the simplest tasks feel overwhelming.

- Joint pain, nerve pain, and muscle aches are common and may come and go unpredictably.

- Many also experience brain fog, which makes it difficult to concentrate, find the right words, or think clearly.

- The disease can also affect the gut, pancreas, liver, and nutrient absorption, leading to digestive and nutritional challenges.

- Since it’s an invisible illness, this can bring emotional strain, including feelings of isolation, misunderstanding, and the pressure to keep going despite everything.

- Flare-ups often strike without warning, making it difficult to plan ahead or keep up with daily life.

- Most people spend years searching for answers before finally receiving a diagnosis.

- Many also experience dismissal or a lack of support from health professionals, often due to how nonspecific or misunderstood the symptoms can be.

Despite how life-altering it can be, and how relatively common it is, Sjögren’s receives far less funding and public attention compared to other autoimmune conditions.

People with Sjögren’s deserve to be seen, heard and supported. Let’s hope we can move closer to that goal this April.

Share this post to raise awareness!

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Sjögren's FoundationApr 01, 2025

Sjögren’s disease is one of the most prevalent yet underrecognized autoimmune diseases, affecting millions of people worldwide. Despite its impact, awareness remains low, and many patients experience delays in diagnosis and a lack of treatment options.

This month, we invite you to Connect, Learn and Thrive. Connect with the Sjögren’s community,

Learn more about the disease and ways to bring awareness to its impact, and Thrive by accessing resources and support that empower you to live your best life with Sjögren’s.

Click the link below to learn more about Sjögren's Awareness Month:

https://www.sjogrens.org/sjogrensmonth

#ThisIsSjögrens

Sjögren's FoundationMar 28, 2025

New Blog Alert: The Rise of Autoimmune Diseases

Autoimmune disease arises when the body loses the ability to distinguish between its own components (like proteins and nucleic acids) and foreign substances (like viruses), and ultimately, attacks its own healthy cells and tissues. There are over 100 types of autoimmune diseases, including Sjögren’s, system lupus erythematosus (lupus), rheumatoid arthritis, and type 1 diabetes. Due to the dysregulation of the immune system and its complex, overlapping signaling pathways, approximately 25% of people who develop an autoimmune disease will develop another.

Click the link below to read more:

https://sjogrens.org/blog/2025/the-rise-of-autoimmune-diseases

Beyond Sjögren'sApr 01, 2025

April is Sjögren's Awareness Month, and we want to take this opportunity to bring awareness to the challenges that people with Sjögren's suffer with:

👉 What is Sjögren's?

Sjögren's is a relatively common autoimmune disease that is most commonly known for damaging moisture producing glands - like tear and saliva glands - causing severe dry eyes and/or mouth.

However, the disease often impacts far more these glands, and can affect the whole body, causing deilitating fatigue, digestive issues, joint and nerve pain, brain fog and more.

👉 How does it affect those who suffer with it?

- They often live with a deep exhaustion that doesn’t improve with rest and can make even the simplest tasks feel overwhelming.

- Joint pain, nerve pain, and muscle aches are common and may come and go unpredictably.

- Many also experience brain fog, which makes it difficult to concentrate, find the right words, or think clearly.

- The disease can also affect the gut, pancreas, liver, and nutrient absorption, leading to digestive and nutritional challenges.

- Since it’s an invisible illness, this can bring emotional strain, including feelings of isolation, misunderstanding, and the pressure to keep going despite everything.

- Flare-ups often strike without warning, making it difficult to plan ahead or keep up with daily life.

- Most people spend years searching for answers before finally receiving a diagnosis.

- Many also experience dismissal or a lack of support from health professionals, often due to how nonspecific or misunderstood the symptoms can be.

Despite how life-altering it can be, and how relatively common it is, Sjögren’s receives far less funding and public attention compared to other autoimmune conditions.

People with Sjögren’s deserve to be seen, heard and supported. Let’s hope we can move closer to that goal this April.

Share this post to raise awareness!

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Sjögren's FoundationMar 17, 2025

According to the 2021 Living With Sjögren's Patient Survey 65% of Sjögren's patients report experiencing frequent headaches and 32% of Sjögren’s patients have been diagnosed with migraines.

Sjögren's FoundationMar 14, 2025

The Sjögren's Foundation is thrilled to celebrate Kathy Hammitt, our VP of Medical and Scientific Affairs, as the recipient of the 2025 Jack Hein Public Service Award from American Association for Dental, Oral, and Craniofacial Research (AADOCR)! Kathy has dedicated her career to advancing Sjögren’s disease research and advocating for patients—work that has transformed care, clinical trials, and awareness.

Join us in congratulating Kathy on this well-deserved recognition!

Click the link below to read more:

https://sjogrens.org/blog/2025/a-lifetime-of-advocacy-recognized-sjogrens-foundation-leader-kathy-hammitt-receives-the

Beyond Sjögren'sMar 14, 2025

With all the craziness that is going in the world, it’s completely normal to want to stay informed. Following the news can give us a sense of control - something much needed when suffering the unpredictability of Sjögren's and its symptoms.

However... continuously following stressful news stories can weigh heavily on us, increasing stress and anxiety—which, as you know, can directly impact symptoms and overall well-being.

It can also limit your ability to connect meaningfully with the people around you and your local community - connections that are deeply healing and supportive.

Your energy is precious! So using it to nurture your health, connect deeply with others, and make a meaningful difference in your local community can bring you more peace and fulfilment into your life.

It’s okay to prioritise your mental and emotional well-being by setting healthy boundaries around news consumption. When you feel better, you'll be better able to support yourself, your loved ones, and your local community.

💬 Have you noticed a difference in how you feel when you step back from constant news updates? Let us know your experience below

Sjögren's FoundationMar 03, 2025

According to our 2021 Living with Sjögren's Patient Survey 82% of Sjögren's patients experience joint pain and 72% of Sjögren’s patients experience muscle pain.

Sjögren's FoundationMar 04, 2025

#TipTuesday: When preparing for surgery, provide your physician with a final list of medications you will bring to the hospital. Ask your doctor if an order can be included on your chart stating that you may take these medications on your own.

We encourage you to share this tip on your page and comment below with your experience(s).

Beyond Sjögren'sFeb 27, 2025

Although hair loss is not a direct symptom of Sjögren’s, it can be a side effect of the condition and its complications, and many people with Sjögren’s can experience hair thinning or increased shedding due to underlying factors linked to the disease, let's explore what they are.

➡️ Several factors can lead to hair loss in Sjögren's, including:

- Thyroid dysfunction & hormonal imbalances, which can often overlap with Sjögren's.

- Chronic inflammation disrupting the hair growth cycle, leading to increased shedding.

- Nutrient deficiencies, including Vitamin D, B, omega 3s and others which are essential for hair health.

- Reduced oil production, which can lead to a dry, irritated scalp and brittle hair.

- Some medications used for Sjögren’s, which can list hair loss as a side effect.

- Chronic stress, which can disrupt the hair growth cycle.

➡️ How can you promote healthy hair growth?

1️⃣ Do regular scalp massages, as studies show they can help increase hair thickness and reduce hair thinning.

2️⃣ Use gentle, sulfate-free shampoos and light oils like argan or jojoba to protect hair strands.

3️⃣ Do your best to manage stress, as chronic stress impacts hormone balance and increases inflammation.

4️⃣ Try your best to follow a whole foods anti-inflammatory diet, which will help address deficiencies and reduce inflammation.

5️⃣ If hair loss persists, consider getting tested for other potential dysfunctions that could be impacting hair loss (such as thyroid dysfunction).

💡 Looking for a holistic way to improve your health?

We have recently launched a program to help people improve their health and address their Sjögren's symptoms through a natural approach, based on what has helped our 1-1 clients.

The program gathers the tools and strategies needed to support your body to heal, balance inflammation, and improve symptoms in a clear step-by-step method.

💬 DM or comment ‘PROGRAM’ for more info!

First Sjögren's Patient Receives Stem Cell Therapy

This treatment aims to help people with Sjögren's Syndrome by addressing dry mouth, a common symptom, using stem cells from the patient's own bone marrow. It might reduce the need for lozenges and improve saliva production.

Sjögren's FoundationFeb 18, 2025

#TipTuesday: Sjögren’s is not a “cookie cutter” disease & affects patients differently. This is why one coping technique will not work for every patient. Finding what works for YOU is a difficult but important process. Although the hallmark symptoms are dry eyes, dry mouth, fatigue and joint pain, Sjögren’s is a systemic disease and affects the entire body.

We encourage you to share this tip on your page and comment below with your experience(s).

Sjögren's FoundationFeb 14, 2025

A Very Happy Valentines Day to You From the Sjögren's Foundation ❤️

Beyond Sjögren'sFeb 13, 2025

Sjögren's can put a big strain on romantic relationships.

From communication issues due to brain fog, to relationship issues due to changing roles, and intimacy issues due to dryness, the challenges can be many.

But although Sjögren's can come with many challenges, there's a lot that couples can do to strengthen their bond, work on the relationship and make their relationship a sanctuary for health rather than sickness. We hope these tips spark some loving and inspiring conversations! 💕

Happy Valentine's Day ❤️

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Want to learn more?

Our "Healing with Sjögren’s Naturally" course includes a lesson on Relationships, helping you navigate challenges, foster understanding, set boundaries, and communicate your needs with confidence.

💬 DM or comment ‘Course’ for more info!

Anti-SSA Antibodies Linked to Severe Dry Eyes

People with anti-SSA antibodies often experience more severe dry eye symptoms, including faster tear evaporation and increased inflammation. This can lead to significant eye damage and reduced vision quality.

Novartis Drops Anti-CD40 Antibody for Sjögren's

Novartis ended development of iscalimab due to concerns about its benefits versus risks. This decision impacts Sjögren's syndrome patients who were potential candidates for this treatment.

AliveDx Receives CE Mark for Autoimmune Test

New diagnostic tools can help identify autoantibodies associated with Sjögren's Syndrome, streamlining diagnosis and treatment by providing more comprehensive results from a single blood sample.

Sjögren's FoundationFeb 03, 2025

According to our 2021 Living With Sjögren's Patient Survey, 60% percent of respondnts are either no longer working or are working a reduced schedule due to their Sjögren’s, and 29% percent of respondents have changed careers because of their Sjögren’s.

Sjögren's FoundationJan 30, 2025

An estimated 93% of Sjögren's patients experience dry mouth, making it one of the most common symptoms of Sjögren's Disease. Many patients will require prescription medications to help treat it but here are some at home solutions that may help alleviate dry mouth.

For more resources and tips, click the link below:

https://buff.ly/48xSx1F