Conquering Sjogren’s: Follow us on our journey to change the face of Sjogren’s

Sjogren's Syndrome Foundation

The Sjögren's Syndrome Foundation (SSF) is proud to be the only national non-profit organization focused on increasing research, education and awareness for Sjögren's.
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Valentine's Day Giveaway!

Posted on Fri, Feb 14, 2020

 

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Valentine's Day Giveaway

To celebrate the season of love, the Sjögren's Foundation is holding our annual Valentine's Day giveaway to show how much we appreciate you! Read below to learn how to enter and win one of three complimentary registrations to the 2020 SSF National Patient Conference!

How to Enter:

To enter, all you have to do is comment "Happy Valentine's Day" below on this blog post by 11:59pm EST today- February 14, 2020. The Foundation will privately email the three winners on Wednesday, February 19, 2020. Winners will be picked at random and the registrations are only transferable through family members, which means your family members may also comment and enter can comment below to give you an extra chance at winning! Please email us at info@sjogrens.org with any questions.

2020 National Patient Conference
April 3-4, 2020
Phoenix, AZ

NPC 2020 CoverPresentation topics will include:

  •  Sjögren's: An Overview
  • Integrative Medicine: A Role for Treatment in Sjögren's
  • Oral Manifestations of Sjögren's
  • "Ask the Doctor" Panel
  • International Sjögren's Research Update
  • Autonomic Nervous System Involvement and POTS
  •  How Coaching Can Help You Live Your Best Life
  •  Sjögren's and Dry Eyes: What's New?
  •  Pediatric Sjögren's
  • Transforming the Future of Sjögren's
  • And more to be announced!

 

Click to learn more

Topics: Sjögren’s

Our Top 5 Tips for Raynaud's

Posted on Sat, Feb 01, 2020

Raynaud’s Syndrome occurs in approximately 38% of patients with Sjögren’s

Raynaud’s Syndrome (sometimes called Raynaud’s phenomenon) is defined as repeated episodes of color changes in the fingers and/or toes with exposure to cold temperatures or during episodes of emotional stress. The color changes are due to a spasm of the blood vessels that feed the fingers and toes. The digits typically turn very white, then can take on a bluish color with prolonged exposure to the cold, and finally can turn very red as blood flow resumes.

Sjogren's Syndrome Foundation's Top 5 Tips to control your Raynaud's Syndrome:raynauds phenom

  1. If you have access to water when a flare starts, run warm water over your fingers and toes until skin color returns to normal.

  2. Do not smoke — this constricts the blood vessels that feed the hands and feet.

  3. Moisturize your hands and feet every day to prevent your skin from cracking.

  4. When your hands or feet start to feel cold, wiggle your fingers and toes, move your arms and legs around to get blood flowing, or put your hands under your armpits to warm them up.

  5. Talk to your doctor about your symptoms. Several medications can be used to help the vessels stay dilated, including a class of blood pressure medications called calcium channel blockers. Some medicines, such as beta blockers used for high blood pressure, may make Raynaud’s worse.

These Tips are from the SSF Patient Education Sheet: Raynaud's Syndrome- Click here to view the full sheet

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Topics: Symptoms, Sjogren's, Top 5 Tips, Raynauds

2019 Highlights from the Sjögren's Foundation

Posted on Tue, Dec 24, 2019

2019 EOY banner - thin

2019 was an exciting year for the Sjögren's Foundation and we want to share with you the impact being made in the fight against Sjögren’s. However, the greatest impact is being made by YOU. It is your generosity and support that has made this past year's achievements possible. Below are some examples of how your donations have made a difference in conquering the complexities of Sjögren’s.

2019 highlights

SERVING AS THE VOICE OF ALL SJÖGREN’S PATIENTS
eularDuring the past year, Foundation staff attended, participated, and presented at numerous meetings and events to help maximize our reach and guarantee that the Sjögren’s community’s voice is heard. One of our top priorities is ensuring that the patient voice is part of every discussion around clinical trials, research initiatives, legislation, and the decisions of government agencies. Just this past year we attended meetings and events held by the National Institutes of Health, the U.S. Food & Drug Administration (FDA), the American College of Rheumatology (ACR), the National Health Council, the American Association for Dental Research, and more. International meetings and research collaborations included the European Congress of Rheumatology (EULAR), Sjögren Europe, the NECESSITY project, HarmonicSS, and the International Association for Dental Research.

CLOSER TO FINDING NEW TREATMENTS FOR SJÖGREN'S
The Foundation's Clinical Trials Consortium, an international initiative to increase the availability and accessibility of therapies to treat Sjögren’s, continues to expand its efforts. Recent meetings were held to further evaluate key issues surrounding clinical trials while focusing on the development of better outcome measures in Sjögren’s and the discovery of diagnostic and prognostic biomarkers. Additionally, in 2019, the Foundation designed and launched the Sjögren’s Training and Education Platform (STEP), the first ever online resource to be used to train clinical trial investigators. There are more than ten pharmaceutical companies working on developing potential therapies for Sjögren’s and the Foundation is engaged with these companies as well as the FDA to ensure that therapies are developed to meet the needs and wants of Sjögren’s patients.

FURTHERING SJÖGREN’S CLINICAL PRACTICE GUIDELINES
CPGs phase 1Phase 2 of the Foundation's Clinical Practice Guidelines (CPGs) is well underway and will expand the number of topic areas covered. Included in Phase 2 are guidelines for pulmonary complications, central nervous system involvement, peripheral nervous system involvement, lymphoma and vasculitis. These will significantly increase the guidance offered on the management and treatment of Sjögren’s. It will also expand the breadth and number of specialists who have not traditionally trained and/or been involved with the of treatment of Sjögren’s. The Foundation is working with nearly 100 healthcare providers recruited to assist with the development of Phase 2.

NEW RESEARCH GRANTEES UNDER REVAMPED PROGRAM
ResearchersNamesThe Foundation was excited to announce the 2019-2020 research grant recipients - the first under the newly revamped Research Grant Program. This new program offers two distinct grant types, the High Impact Research Grant at $75,000 and the Pilot Research Grant at $25,000. The research review committee also renewed three research grants from the 2018-2019 awardees. 
 
The Foundation uses a rigorous review process that chooses our awardees by determining which projects will have the greatest potential impact on the lives of those living with Sjögren’s while placing a high priority on both clinical and scientific research into the cause, prevention, detection, and treatment of Sjögren’s. The Foundation is excited that this past year we saw a substantial increase in the number of applications received.

PROVIDING PATIENT SUPPORT & SJÖGREN'S EDUCATION
  • education2In April, over 550 people attended the Foundation's National Patient Conference (NPC) near Boston, MA. This was the largest attendee turnout ever for an NPC. Another 175 people recently attended a one-day patient conference in Cleveland, OH.
  • The Foundation continues to support 65 local support groups and Awareness Ambassadors throughout the U.S.
  • The Foundation also continues to develop a patient newsletter with up-to-date information while addressing pressing topics and patient tips.
  • In 2019, the Foundation created and launched a new web series on YouTube called Exploring Sjögren’s which explores the disease and the lives of patients living with Sjögren’s and how they cope.
  • Additionally, the Foundation website, www.sjogrens.org, remains a top source for Sjögren’s information for patients, their families, and healthcare providers.

PROVIDING CREDIBLE RESOURCES & EDUCATION FOR HEALTHCARE PROFESSIONALS
  • SQ-2The Foundation led a successful effort to revise the U.S. ICD-10 code (International Statistical Classification of Diseases and Related Health Problems, 10th revision) for Sjögren's - a major victory for Sjögren's.
  • The Foundation attended the ACR Annual Meeting where it hosted a Study Group on Global Updates in Sjögren's and participated in multiple poster and abstract sessions.
  • The Foundation recently attended the Pri-Med Conference for primary care physicians where it presented a continuing medical education session on Sjögren's to more than 800 doctors.
  • The Foundation continues to produce Sjögren's Quarterly, a complimentary publication distributed 4x a year to all healthcare professionals and researchers interested in Sjögren's.

Once again, on behalf of the Sjögren's Foundation, thank you for helping to make these 2019 successes and accomplishments possible! Your support and generosity has helped the Foundation continue our fight to conquer the complexities of Sjögren's. If you would like to learn more or have any questions about our programs and initiatives, please do not hesitate to contact the Foundation. We are truly grateful for your help and look forward to achieving even greater success in 2020!

All my best,

Steve_Sig.jpg
Steven Taylor
Chief Executive Officer
 
We encourage you to share this with family and friends so they too have the opportunity to see the work and impact the Foundation is having in the fight against Sjögren’s.
 
Make a Donation Now
 

Topics: Sjögren’s

Ask the Expert: Is the flu shot recommended if you have Sjögren's?

Posted on Mon, Nov 18, 2019

Question_and_AnswerIs the flu shot recommended if you have Sjögren's?

As a patient with Sjögren’s you are wondering about whether or not you should receive a flu vaccine this year. I do believe it is important to gain some knowledge about the flu.

First let’s learn about last year’s flu season. The 2018- 2019 influenza season was moderately severe, with activity beginning to increase in November, peaking in mid-February, and returning to below baseline in mid-April.

The 21-week season was the longest in 10 years. CDC estimates that from October 1, 2018 through May 4, 2019, there have been 531,000– 647,000 flu-related hospitalizations and 36,400–61,200 flu deaths.

People with flu can spread it to others up to about 6 feet away. Most experts think that flu viruses spread mainly by droplets made when people with flu cough, sneeze or talk and less commonly from surfaces. People with flu are most contagious in the first 3 to 4 days after the illness began. Most healthy adults may be able to infect others beginning one day before symptoms develop and up to 5 to 7 days after becoming sick. Children and some people with weakened immune system may pass the virus for longer than 7 days.

Antiviral drugs can lessen symptoms and shorten the time you are sick by 1 or 2 days. They also can prevent serious flu complications, like pneumonia. For people at high risk of serious flu complications, treatment with antiviral drugs can mean the difference between milder or more serious illness possibly resulting in a hospital stay. CDC recommends prompt treatment for people who have influenza infection or suspected influenza infection and who are at high risk of serious flu complication.

An annual seasonal flu vaccine is the best way to help protect against flu. Vaccination have been shown to have many benefits including reducing the risk of flu illness, hospitalizations and even risk of flu reiterated complications. Flu vaccine cause antibodies to develop in the body about 2 weeks after vaccination. These antibodies provide protection against infection with the viruses that are in the vaccine.

The seasonal flu vaccine protects against the influenza viruses that research indicates will be the most common during the upcoming season. Traditional flu vaccine (called “trivalent” vaccines) are married to protect against three flu viruses and influenza A (H1N1) virus, and influenza A (H3N2) virus, and an influenza B virus. There are also flu vaccines made to protect against four flu viruses (called “quadrivalent” vaccines). These vaccines protect against the same viruses as the trivalent vaccine and an additional B virus. Patient’s over age 65 need high-dose vaccine.

Annual vaccination against seasonal influenza is recommended for all U.S. persons aged 6 months. Effectiveness of seasonal influenza vaccine varies by season.

A paper by Wahren-Herlenius and colleagues, published in 2017 addressed the effect of H1N1 flu vaccine in patients with Sjögren’s. Untreated Sjögren’s patients had an exaggerated response with higher IgG levels to H1N1 flu vaccine, hydroxychloroquine-treated patients did not show any exaggerated response.

To summarize, I strongly recommend inactivated injectable flu vaccines for Sjögren’s patients but caution is warranted when considering vaccination in non-treated Sjögren’s patients who have really active disease with multi-organ involvement. The patients on immunosuppressive medications (like prednisone, methotrexate, azathioprine, mycophenolate mofetil, rituximab) should not receive live attenuated influenza vaccine (the nasal spray flu vaccine).”

Mehrnaz Maleki Fischbach, MD

This information was first printed in The Moisture Seekers, SSF's patient  
newsletter for members. 

Click Here to Receive our Newsletter  by Becoming an SSF Member

Topics: Sjogren's, Flu Shot, Ask the Expert

Ask the Expert: Light sensitivity and headaches with Sjögren's

Posted on Fri, Oct 25, 2019

Question_and_Answer

“I’ve been experiencing light sensitivity and have been getting more headaches. Is this common with Sjögren’s?”

Most people who have Sjögren’s will have dry eyes, also called keratoconjunctivitis sicca. Sensitivity to light (also known as photophobia) is one of the common symptoms experienced by people who have dry eyes, though not everyone with dry eyes experiences light sensitivity. However, dry eyes alone do not commonly cause headaches. The most common cause of light sensitivity and headaches would be migraine headaches. If your headaches are primarily located on one side of the head, then there is a good chance that this problem could be related to migraine rather than to dry eyes. Migraine headaches are also often associated with nausea, sound sensitivity, and typically get worse with physical activity. If these apply to your headaches, then you should ask your doctor if you may have migraine headaches, which require treatment different than that used for Sjögren’s dry eyes. 

If your headaches primarily occur after comput- er work, then the possibility of “Digital Eye Strain” should be considered. The American Optometric Association (AOA) also calls this “Computer Vision Syndrome.” Having poor ergonomics and posture while performing prolonged computer work can cause strain on the joints and muscles of the head, neck, and shoulders which can, in turn, lead to muscle tension headaches. Dry eyes also typically worsen during computer work. While concentrating on computer work, blinking is reduced by a third or more, resulting in increased evaporation of the moisture covering our eyes. Common symptoms of Computer Vision Syndrome include headaches, blurred vision, dry eyes, eyestrain, and neck and shoulder pain. Both the AOA and the American Academy of Ophthalmology recommend abiding by the 20-20-20 rule: take a 20-second break every 20 minutes during computer work to view something 20 feet away to help minimize this problem. Other things you should do while performing computer work include concentrating on blinking more often, using artificial tears frequently, using an anti-glare computer screen protector, using a desk humidifier, and positioning your computer screen so that the center is 4-5 inches below eye level.

Some patients who have Sjögren’s can have other problems with their eyes that can cause light sensitivity but are much less common than dry eye. Inflammation of the white portion of the eye (the sclera) is called scleritis, and inflammation of the colored portion of the eye (the iris) is called iritis (or anterior uveitis). Both of these cause light sensitivity and usually cause the sclera to become red or pink, causing eye pain rather than a true headache. These two conditions are also treated differently than dry eyes.

The best person to sort out these possibilities is an eye doctor, either an ophthalmologist (a medical doctor, MD; or a doctor of osteopathy, DO) or an optometrist (optometry doctor, OD). If you have been diligent with treating your dry eyes with artificial tears every few hours, using a humidifier, not smoking, staying hydrated, etc. and the light sensitivity and headaches continue, I would recommend that you call and see your eye doctor as soon as possible for appropriate evaluation. The correct treatment depends upon identifying the actual cause of your symptoms.

By Donald Thomas, MD
 
This information was first printed in The Moisture Seekers, SSF's patient  
newsletter for members. 

Take Control of Your Health!  Receive our Newsletter by Becoming an SSF Member
 

 

Topics: sun and sjogren's, Dry Eyes, Symptoms, Sjogren's, Sun Sensitivity, Light Sensitivity

Why I Run for Team Sjögren's: Dr. Scott Lieberman

Posted on Mon, Oct 14, 2019

SSF Turkey Trot 2019“How did you first become involved with the Sjögren’s Syndrome Foundation?”

I am a pediatric rheumatologist with an interest in better understanding Sjögren’s in children. This naturally led to me to connect with the Sjögren’s Syndrome Foundation (SSF). My first formal interaction with the Foundation was in 2015, when the SSF invited me to contribute to their publications to help raise awareness that children get Sjögren’s too. Along with a colleague and friend, Dr. Jay Mehta at the Children's Hospital of Philadelphia, we wrote articles for The Moisture Seekers, Sjogren’s Quarterly and put together an SSF Patient Education Sheet on pediatric Sjögren’s. This was a start to many additional interactions with the Foundation, which have been great experiences for me on many levels. I am constantly amazed by how much the SSF does to promote awareness and to help better understand Sjögren’s in all people, in order to develop better treatments to help improve the quality of lives of those with this potentially devastating, yet for some reason often overlooked, disease.

20171123_083926“What made you and your son decided to run a Turkey Trot race for Team Sjögren's?”

A few years ago, my son Tyler developed an interest in running, and we started running 5K races together. I knew about the Team Sjögren’s running events where participates from around the country would run together as a team, but we have not been able to make those. Then when I saw an email about running as a part of Team Sjögren’s but in one’s own local Turkey Trot, I mentioned it to Tyler. He was excited, so we signed up for our local Turkey Trot in Cedar Rapids, Iowa, and also signed up with the SSF to run this race for Team Sjögren’s.

“Before running in the race, was your son familiar with Team Sjögren's and how did you explain it to him?”

Besides participating in efforts to better understand Sjögren’s in children, I run a basic immunology laboratory focused on understanding what goes wrong with the immune system leading to the autoimmune attack on tear and saliva-producing glands in Sjögren’s. Tyler has heard me talk about Sjögren’s around the house on many occasions and has watched me practice various talks on the different aspects of Sjögren’s. (I actually included Tyler in the acknowledgments during my presentation on Pediatric Sjögren’s at the 2017 SSF National Patient Conference because he had made some suggestions when I was practicing that talk!)

Representing Team Sjögren’s at our local Turkey Trot meant something to both Tyler and myself. He wanted to make sure he understood what exactly it meant to run as a part of Team Sjögren’s. I explained to him that by wearing the Team Sjögren’s shirts and hats and pins to the race we were helping to raise awareness about this disease. I explained to him that this was especially important because many people do not even know that this disease exists, even though it is actually very common. He wanted to know what he should say to people if they asked what Team Sjögren’s was. Then he wanted to practice his response after I explained to him that autoimmune diseases occur when one's immune system gets confused and begins to attack one's own body, and that with Sjögren’s, the immune system attacks the tear and saliva-producing glands but can also attack almost any other part of the body too. That led to many additional questions about the disease and made him much more confident in fully representing Team Sjögren’s on race day.

“Did anyone at the race ask you or Tyler about Sjögren’s?”

Tyler and I wore our Team Sjögren’s shirts, hats, and pins for the race. Undoubtedly, people saw that we represented Team Sjögren’s, but unfortunately, Tyler did not get the opportunity that day to explain to anyone what Team Sjögren’s was. Maybe we ran so fast that no one could stop us to ask!

Click here to purchase your Team Sjögren's Turkey Trot T-shirt/kit with our new 2019 design! 

Click here to order your Team Sjögren's Goes TURKEY Kit!

       Team Sjögrens T Shirt Front   Turkey Trot Kit 

Topics: Team Sjogren's, Turkey Trots

Ask the Doctor: Skin Rashes and Sjögren's

Posted on Mon, Sep 23, 2019

Skin Rashes and Sjögrens

Skin rashes most certainly occur in the setting of Sjögren’s. As opposed to many of the other autoimmune skin rashes that I see in my autoimmune dermatology clinic, there are no rashes that are specific for Sjögren’s. In other words, I cannot look at a rash in a Sjögren’s patient and immediately tell them that they have Sjögren’s. In comparison, I can often look at a lupus rash and tell the patient they have underlying lupus. That being said, Sjögren’s patients exhibit a variety of skin rashes that are important to recognize and know when to see a board-certified dermatologist.

By and far the most common skin conditions associated with Sjögren’s are xerosis, or clinically dry skin, and eczematous dermatitis. These are caused primarily by barrier dysfunction of the skin. Gentle skin care practices and liberal moisturizers are the best way to prevent these common skin eruptions. When caring for your skin you should take no more than one short, lukewarm shower per day. You should remain in the shower for less than 10 minutes. Soaps like Dove sensitive and VanicreamTM, can be utilized as they will not strip your skin. If a wash cloth is used while bathing, it should be limited to areas that give off body odor like the armpits, genital, and buttock areas, in order to not disrupt the skin barrier. Immediately after getting out of the shower, you should pat dry and then apply a moisturizer. Ointments are the best moisturizers followed by creams. Lotions are not typically moisturizing enough for patients with Sjögren’s. The best ointments are Vaseline® or Aquaphor®. If an ointment is too greasy for your taste, cream moisturizers like CeraVe®, VanicreamTM, Eucerin®, or Aveeno®can be used. For itchy skin, Sarna Original lotion can give immediate relief especially when stored in the refrigerator. If scaly, dry skin is present, utilizing moisturizers with lactic acid, urea, or salicylic acid can be used. Examples include: AmLactin®, CeraVe® SA, and Eucerin® Roughness Relief. If your rash is not responding to moisturizers and gentle skin care practices, a prescription corticosteroid cream or a steroid-sparing anti-inflammatory cream may need to be prescribed by your physician.

If you develop a purple-to-red rash that does not lighten, or blanch, with pressure, ulcerations of the skin, or a purple net pattern on your skin, this should prompt you to see a dermatologist for evaluation. Rashes that are associated with purpura (blood spots) can represent vasculitis, an inflammation of the blood vessels. Although these rashes are not as common as the ones discussed above, they are important to recognize in Sjögren’s patients and should be seen quickly by a dermatologist.

Natalie Wright, MD, FAAD

This information was first printed in The Moisture Seeker, SSF's member newsletter.

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Topics: Sjogren's, Treatment, Dry Skin, Flare,, Sun Sensitivity, Skin Rashes, Vitamin D, Lupus, Vasculitis

Yoga and Sjögren's: There's a pose for that!

Posted on Thu, Sep 12, 2019

As finding alternatives to overall wellness, mind and body, continue to evolve in present day, many holistic health techniques have stood the test of time, proving to offer benefits that heal the body from the inside out. Yoga is one of these holistic healers. Many centuries ago, when yoga was said to be created, ancient peoples made yoga their daily routine to treat and ward off disease and to become peaceful in the mind. The body would react to this practice over- time, ceasing illness and spiritual negativity from the body. As I continue on my journey into offering yoga for therapeutic purposes as a registered yoga teacher, I witness what these ancient yogis were onto. Yoga is a practice that benefits the body in many ways. Different yoga poses promote healing for different body parts. Here are some poses that have exponential benefits:

Energize & Open Your Heart with Camel Pose 

Camel Pose

Sanskrit Name: Ustrasana

Boost your energy and open your heart with camel pose. This pose is known for eliminating the feeling of sluggishness or fatigue and promoting energy through the body while creating more oxygen to the brain. Come to your knees on the floor with knees hip-distance apart. Allow your toes to untuck and stabilize through the legs. Bring your hands to your lower back with palms facing in and finger tips facing down. Push the pelvis forward to create space for the spine to keep alignment. Inhale and lift your heart higher by letting the shoulder blades relax down the back. Exhale and allow your back to release down, energy through the crown of the head as you lean back. Let your neck relax, tensing up here will be counteractive. Breathe deeply for 5 to 10 breaths or until you find comfort in the pose. Inhale to slowly rise back up to a straight spine. Release with a few trunk twists or any movement that will feel good to your body after this pose.

Take a Chill Pill & Relieve Anxiety with Bridge Pose

Sankrit Name: Setu Bandha SarvangasanaBridge

Feeling anxious and nervous about something? Alleviate stress, worry, and anxiety with bridge pose, a beginner’s inversion.

Lie flat on your back with knees bent parallel, feet flat on the ground, arms down by your sides. On your inhale, rise your pelvis toward the sky and keep pushing down through the feet and hands to balance the weight. Take this a step further by placing a block or study pillow under the back to stay with your pelvis elevated. Stay here for about 5 breath cycles. On a slow exhale, lower back down slowly to your mat and repeat.

Ease S.I. Joint Discomfort with Triangle Pose

Sanskirt Name: Trikonosana Triangle

Experiencing aches and pains in your lower back area? It could be something deeper caused by your sacroiliac joint, the pelvis joint formed by the sacrum and ilium. Its main function is to manage stability and weight transfer. While many experience this pain, so few actually know it
is connected with their sacroiliac joint. Visiting a chiropractor if you are unsure is highly recommended, however, spending some time on your yoga mat may be the best way to relieve the pain. Standing poses, like Triangle Pose (Trikonosana), can increase strength in the glutes and rotator muscles, which help support the S.I. joint.

Stand up against a wall and step feet apart with a wide stance, feet should be wider than shoulder-width and toes facing forward. Turn your left toes to face
the side, so that your left foot is now parallel against the wall. Press into both feet, pull up in the knees, and keep the legs straight. Push into the right hip and bring the arms into a T, with finger tips reaching away. Begin to reach your left hand down toward your toes, 
and continue to bring your right arm up and back. Continue to reach until the shoulders are stacked vertically and you reach your shin, toes, or the ground inside your left foot. Engage your core and try to keep your bottom from touching the wall without leaning forward. Breathe deeply 5 to 10 breath cycles. Inhale to rise back up to standing. Reverse the feet and re-peat on other side.

About the Author

Lee-Ann has a deep–rooted, therapeutic connection with yoga, and aspires to create opportunities for others that foster personal growth and well-being. She completed her RYT 200 at Bombay Yoga Company in 2016 and teaches at Mellow Yoga Studio in Philadelphia, PA. Lee-Ann recently created Two Hearts Dance & Yoga.

This information was first printed in The Moisture Seeker, SSF's member newsletter.

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Topics: Sjogren's, Joint Pain, Fatigue, coping with sjogren's, Chronic Pain, Flare,, Natural Treatments, Yoga

Get the Inside Scoop & Receive the Sjögren's Foundation Newsletter!

Posted on Thu, Aug 29, 2019

Summer TMS CoverFor $3 a month, you can become a member of the Sjögren's Foundation and receive great resources, while also supporting the vital work being done to conquer this complex disease.

Join now with thousands of others who subscribe to our newsletter and receive discounts on Sjögren's resources. 

Member benefits include:

  • A subscription to the Sjögren's Foundation patient newsletter: This newsletter contains the latest information on Sjögren's, practical tips for daily living, and answers to medical questions from the experts.

  • A New Member packet with helpful information about Sjögren's and the SSF. 

  • You will receive updates on new product launches and information/discounts available to SSF Members for over-the-counter and/ or prescription products.

  • Receive information about upcoming Sjögren's clinical trials and clinical research in your area.

  • Access to a network of knowledgeable volunteers and local support groups.

  • Exclusive access to the members-only section of sjogrens.org, featuring resources unavailable to other site visitors such as archives of the most popular newsletter articles, our online product guide and access to our online community.

  • Members-only discounts on a variety of products and services such as The Sjögren's Syndrome Handbook and registration for our educational conferences.

  • Providing the Foundation with one more voice to increase awareness, educate others, and encourage research – all of which help in the fight to conquer Sjögren's.

    Click here to become an SSF member today and email us at info@sjogrens.org with any questions. 

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Topics: Pulmonary manifestation, Dry Mouth, Dry Eyes, Sjogren's, Joint Pain, Fatigue, coping with sjogren's, Gastroesophageal Reflux, Advocacy, Sjögren’s, Heart disease

Pain and Sjögren's

Posted on Thu, Aug 15, 2019

Pain and Sjögrens Chronic pain is one of the most common symptoms associated with Sjögren’s. I have the interesting position of working as a healthcare provider in the field of comprehensive pain medicine as well as being a Sjögren’s sufferer. My role working as a Physician Assistant and Chiropractor is to help patients manage their pain. In our practice, we treat a variety of diverse conditions with a continuum ranging from carpal tunnel syndrome to abdominal pain and everything in between. While this can be a challenging area of medicine to practice, it is also quite rewarding to assist others in living a more enhanced quality of life.

Prior to being diagnosed with Sjögren’s, I rarely experienced pain. Recently, I was reminiscing back to a time not many years ago in which I only used ibuprofen once or twice over several years’ time. My own personal struggle with Sjögren’s causes me to endure discomfort in various areas of my body every day. I experience joint pain, especially in my knees and fingers. The nerve sensations in my muscles are also very discomforting. Additionally, only since the development of Sjögren’s, I suffer from debilitating pelvic pain. Non-steroidal anti-inflammatory medications ibuprofen and Celebrex seem to help the greatest for my pain. Heat is also quite effective. When I make more anti-inflammatory diet choices, my pain is absolutely better. This includes avoiding excessive sugars, flour, dairy, red meat as well as processed and fried substances. When I regularly take vitamin D and eat fresh cherries the pain also improves. If I have poor stress management and sleeping habits, my pain worsens. Finding motivation for regular exercise can be difficult as I also fight significant fatigue, but I know that movement is necessary to keep my joints and muscles mobile. I also use a TENS unit from time to time as well as over the counter lidocaine products.

It is fulfilling to assist in improving the quality of life of others that suffer from chronic pain. This is especially meaningful being that I endure pain daily. I encourage anyone experiencing chronic pain to seek out a comprehensive pain management specialist for evaluation.

by Rebecca Hosey, DC, MSPAS, PA-C

Dr. Rebecca Hosey is a Board Certified Physician Assistant and Chiropractor. She has practiced interventional pain medicine for many years and was diagnosed with Sjögren’s in 2015.

This information was first printed in The Moisture Seeker, SSF's member newsletter.

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Topics: Symptoms, Sjogren's, coping with sjogren's, Chronic Pain, Vitamin D, Natural Treatments

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