Sjögren's Foundation

04/09/2025

LAST CALL FOR REGISTRATIONS

The 2025 National Patient Conference is THIS WEEKEND - don't miss your chance, register today!

This two-day, educational conference is the largest Sjögren's Foundation educational event. Because it is virtual, attendees are able to watch the presentations from the comfort of their own home. For registrants who can't attend the live virtual event, or would like to re-watch, the conference will be recorded and available online for up to 6 months.

Click the link below to register:
www.sjogrens.org/npc

The National Patient Conference is the Sjögren’s Foundation’s largest educational event, bringing together patients and talented medical experts to provide the latest information on Sjögren's disease. This is a virtual event, participate from the comfort of your home while still benefiting fro...

04/09/2025

Susan

'Sjögren's had had the biggest impact on my physical health. Fatigue has forced me to modify a number of activities and seek help for others (such as using house cleaners).

I take charge of the things in my control - eating healthy, exercise, and a positive attitude. And when I'm having a bad day, I don't feel guilty about doing nothing or staying in my pajamas all day...Don't let Sjögren's be the first and last thing you think of every day. Enjoy the people around you and focus on the good things in your life.

Live your best life! You are much more than your disease. Take that trip, go on that hike, meet your friends for dinner, take a fun class. Don't be afraid to live!'

Click the link below to read more of Susan's story:
https://sjogrens.org/awareness-stories

04/08/2025

In March, we hosted a congressional briefing on Capitol Hill to bring awareness to Sjögren’s, lupus, and other autoimmune diseases.

Joined by the National Institutes of Health (NIH)’s Office of Autoimmune Disease Research and Lupus Therapeutics, we shared the OADR strategic work, powerful patient stories, the daily challenges of life with autoimmune disease, and the deep frustration so many feel over delayed diagnoses and limited treatment options.

We also emphasized something our community already knows: we need more research and more investment in autoimmune diseases like Sjögren’s and lupus.

The timing couldn’t have been more meaningful. Just one day before the event, House Resolution 245 was introduced Congressman Joe Morelle (D-NY-25), officially recognizing April as Sjögren’s Awareness Month and acknowledging Sjögren’s as a serious, systemic autoimmune disease.

Read the recap and see how we’re bringing the voice of patients to the national stage: https://sjogrens.org/blog/2025/the-sjogrens-foundation-hosts-a-congressional-briefing-to-advocate-for-sjogrens-lupus-and

Lupus Research Alliance

04/08/2025

: When trying new products, take a picture on your phone of each product you try and make a note if they helped. Start a file in your photos to keep them in order.

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

04/08/2025

Finn

'As a 21 year old with Sjögren’s, it’s really affirming to hear stories of other people who got diagnosed very young, and are still able to live fulfilling lives. And thanks to the people who came before me in terms of advocating for medical care, I have the confidence and motivation to advocate for myself in medical settings.

I have a wonderful therapist, and a family that really supports me and has helped me access the treatment I need to live a happy healthy life. My partner is also incredibly supportive, and really helps me feel not alone in my struggles.

Research your medication side effects and possible interactions, it’s very helpful to have your own research so you can ask your care team better questions about your care plan!'

Click the link below to read more of Finn's story:
https://sjogrens.org/awareness-stories

04/07/2025

Sjögren’s has traditionally been thought to most commonly occur in older populations. However, an estimated 54% of diagnosed patients believe they first started exhibiting symptoms much earlier. An estimated 16% of patients believe there symptoms began as a child and 37% believe they started as a young adult.

04/07/2025

Jennifer

'Sjögrens has affected my life physically in many ways. From being more limited in what I can do physically and managing pain and symptoms, it’s part of my life every single day. Emotionally having a chronic illness takes a toll on your mental health and can cause feelings of guilt, loss and sometimes even anger.

Connecting with others that understand how Sjögrens impacts your life has been incredibly impactful and important to me. Not only does it validate your symptoms but I’ve been able to better understand my own illness better through hearing the experiences of others. It’s nice to feel solidarity with those that truly understand what you are going through.

Do lots of research! Connect with others who have Sjögren's or other autoimmune diseases. It really helps to hear how others manage their symptoms. Don’t be scared to advocate for yourself and get a second opinion or different doctor if you don’t feel heard. '

Click the link below to read more of Jennifer's story:
https://sjogrens.org/awareness-stories

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04/06/2025

Lauren

'Sjögren’s had taught me how ableist I didn’t realize I was. I used to think life wouldn’t be worth living if I didn’t have my intelligence and have full control of my faculties. Turns out life is still amazing even with short term memory problems, brain fog, and episodes of confusion. I was completely wrong.

Tell your doctor about all your symptoms, even non-physical ones. I’ve had significant mental problems because of Sjögren's: brain fog, short term memory issues, bouts of confusion. It’s scary, and it shouldn’t be kept from your doctors.

Find out what works for you mentally to keep going. Maybe how much you love your friends and family. Maybe it’s throwing your emotions into art, writing, or physical activity. Maybe it’s being spiteful towards Sjögren’s, like 'screw you Sjögren’s my eye drops, probiotics, plaquenil, and physical therapy will defeat you'. Or, 'Haha Sjögren’s, I’m still gonna be alive in the next hour, next 15 minutes, next 30 seconds'. Whatever you need to do to get through the pain.'

Click the link below to read more of Lauren's story:
https://sjogrens.org/awareness-stories



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04/05/2025

Cynthia

'Most people don't understand that Sjögren's is a hidden disability. Many friends and family don't quite understand why Sjögren's patients avoid human interaction for the safety of our compromised weak autoimmune health condition.

Gradually build a routine that fits your needs and preferences. I enjoy lap swim three days a week, relax in sauna, walk 3 miles, chair yoga, take naps and I joined a stretch class...During hard days, I love putting 1000 piece puzzles together, painting and embroidery to relax my mind.'

Read more of Cynthias's story by clicking the link below:
https://sjogrens.org/awareness-stories

04/04/2025

The first two Spring Walk for Sjögren's events are TOMORROW and we hope to see you there!

Southeast Virtual Walk for Sjögren's - for all of Florida, Georgia, North Carolina, South Carolina
10am ET - VIA ZOOM

Southwest Virtual Walk for Sjögren's - for all of Arizona, New Mexico, Utah
10am MST - VIA ZOOM

Join us at the virtual Opening Ceremony over Zoom where attendees can connect with their local Sjögren's community, participate in our 'Ask the Doctor' segment, and be eligible to win raffle prizes.

Click the link below for more information:
www.sjogrens.org/walks

04/04/2025

April is Sjögren's Awareness Month. We encourage you to follow our April campaign and remember that every day is an opportunity to start a conversation about Sjögren’s and how it affects you.

Thomas:

'Sjögren's has been a very effective Hoover vacuum sucking most of my primary resources in my life. As with many Sjögren's patients, a diagnosis took some time, my being a man, just compounded the puzzle. Once recovered, I was not able to return to my position as a flight attendant as no doctor could guarantee I would remain stable working at 30,000 ft. Through support of my friends and family I made it through the devastation to my entire life. I try to keep up with all the latest information and advice regarding our disease and have educated many, including some doctors.

Sjögren's has taught me patience, to look at life's gifts from the positive, research and be as prepared as possible for the prognosis...I wish people knew how debilitating this disease can be and understand if occasional fatigue, mouth sores or other symptoms interferes with daily life/plans. "Funny, you don't look sick".

Research and find out all you can about your particular case. There are a lot of similarities within the Sjögren's community while just as many differences. Stay positive and don't obsess...Do not take the diagnosis as an excuse to bow out of life. Stay on track and keep getting on with plans and dreams. '

Read more of Thomas's story by clicking the link below:
https://sjogrens.org/awareness-stories

04/03/2025

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.

04/03/2025

April is Sjögren's Awareness Month. We encourage you to follow our April campaign and remember that every day is an opportunity to start a conversation about Sjögren’s and how it affects you.

Jennifer:

'Sjögrens has affected my life in every way. I don’t make many plans on the weekends so that I can recover from working and parenting all week. If I don’t rest, I will inevitably flare. My husband and I lost many social connections, but prioritizing health and family helps me manage my fatigue much better. I also had to really readjust my self-image after my diagnosis. I am a natural caretaker, and learning how to ask for support from friends and family was very hard. My ego took a hit, but learning how to ask for help with basic chores like carpooling, grocery shopping has helped me take better care of myself as well as given my family and friends some insight into my health journey. Financially, I’ve spent a lot of money trying to improve my diet and health through dietary changes, vitamins, and holistic healing.

There is no one size fits all approach. Try lots of things. See what helps. Ask for support from your friends and family. Don’t give up. Sjögrens is not a death sentence luckily.

I thrive when I make decisions that are best for me and my health and don’t cave in to FOMO or social pressure.

Connect with others living with Sjögrens. You are not alone. And take care of your eyes and mouth in the winter when it’s cold and dry.'

Read more of Jennifer's story by clicking the link below:
https://sjogrens.org/awareness-stories

04/02/2025

National Patient Conference Topic Highlights:

Childhood Sjögren's
Presented By: Scott Lieberman, MD, PhD

Children living with Sjögren’s will often present differently than adults. Dr. Lieberman will provide an overview of childhood Sjögren’s and give an update on research that is happening through the international childhood Sjögren’s workgroup.

Understanding Endotypes and Patient Profiles in Sjögren's
Presented By: Sara McCoy, MD, PhD

We know that Sjögren’s is a heterogenous disease and that patients can experience a wide variety of symptoms. In this session, Dr. McCoy will share research studies that describe different patient profiles (endotypes) and why this matters for understanding how your disease might progress as well as why this might affect management and treatment.

Sjögren's and your Ears, Nose and Throat
Presented By: Nadia Mohyuddin MD, FACS

Dr. Mohyuddin will discuss the effects Sjögren’s can have on the Ears, nose and throat along with options for alleviating symptoms and preventing complications.

Chat with a Doc
Presented By: Donald Thomas, MD, FACP, FACR

This session runs for one hour, concurrent to other programming. Dr. Thomas will answer general questions about Sjögren’s that may not be covered by other speakers. Please note: This session is not a private chat area, and personal medical advice will not be given.

The 2025 Virtual National Patient Conference is April 11th, 12:30 - 5:00pm (ET) and April 12th, 12:30 - 4:30pm (ET).

Register today by clicking the link below:
www.sjogrens.org/npc

04/02/2025

April is Sjögren's Awareness Month. We encourage you to follow our April campaign and remember that every day is an opportunity to start a conversation about Sjögren’s and how it affects you.

Carrie:

'Before I was diagnosed, I had such severe joint pain that it was hard to do things, my hips hurt so bad I couldn't walk right. I have chronic fatigue and brain fog. I have dry eyes and mouth that make eating and taking pills difficult.

I like to see that there are others out there that understand what I am going through. Realizing that some things I have going on are related to this disease and having an 'aha' moment of why it is an issue.

I do what I can to take care of my symptoms, I learn to pay attention to what is going on and take care of it.'

Read more of Carrie's story by clicking the link below:
https://sjogrens.org/awareness-stories

04/01/2025

: Share your story and educate others! By doing so, you are helping spread the message that Sjögren's is a serious disease that deserves to be recognized.

April is Sjögren’s Awareness Month, a time when we come together as a community to amplify the voices of those living with Sjögren’s disease and bring much-needed attention to this complex and often misunderstood disease. Through storytelling, we want to increase awareness of the disease, unite the community and shine a spotlight on the experiences of those living with Sjögren’s.

If you would like your story to be featured in this year's campaign, please click the link below. We will share 30 stories of real patients throughout the month of April and all stories submitted are eligible to be featured by the Sjögren's Foundation.

https://info.sjogrens.org/april-awareness

04/01/2025

April is Sjögren's Awareness Month. We encourage you to follow our April campaign and remember that every day is an opportunity to start a conversation about Sjögren’s and how it affects you.

Shelby:

'Sjögren's has had a significant impact on my physical health. In addition to dry eyes and dry mouth, I deal with fatigue, brain fog, and joint pain/swelling. I end up getting cavities often, I have scarring in my right eye, and I have sun sensitivity. It definitely gets me down sometimes thinking about what life would be like without this disease, but I try to keep positive!

It's been so helpful getting to hear others share their experiences. When I was first diagnosed, finding a community helped me navigate the diagnosis and learn tips and tricks for managing symptoms.

The Sjögren's Foundation has also been a vaulable resource in learning about Sjögren's. I've found some great support groups that help me feel less alone. I'm also lucky to have a partner who has supported me through everything, and (sometimes literally) helps carry me through the rough days.

Just like with any other invisible illness, I just wish that our symptoms weren't so easily dismissed by others. Some days I'm moving slow, I'm having trouble talking, or I just need a day of rest, and that's due to a disease I can't control. A little patience goes a long way.'

Read more of Shelby's story by clicking the link below:
https://sjogrens.org/awareness-stories

04/01/2025

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