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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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

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 Sarvangasana

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 

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 SSF Newsletter!

Posted on Thu, Aug 29, 2019

Summer TMS CoverFor $3 a month, you can become a member of the Sjögren's Syndrome Foundation (SSF) 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:

  • The Moisture Seekers newsletter: This 10 issues a year print 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. 
    *U.S. residents only. 


  • 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

Acupuncture for Dry Eye

Posted on Mon, Jul 15, 2019

acupuncture July is Dry Eye Awareness Month!  We hope you enjoy this blog post aimed to promote dry eye awareness and education.

The “Living with Sjögren’s” patient survey, conducted by Harris Poll on behalf of the Sjögren’s Syndrome Foundation, SSF, showed that 92% of Sjögren’s patients suffer from dry eye. Chronic dry eye has two main causes: decreased secretion of tears by the lacrimal (tear-producing) glands and loss of tears due to excess evaporation. Both can lead to ocular surface discomfort, often described as feeling of dryness, burning, a sandy/gritting sensation, itchiness, visual fatigue, sensitivity to light and blurred vision. In Sjögren’s, a person’s white blood cells mistakenly invade moisture-producing glands and affects the entire body, including the lacrimal glands, causing inflammation and reducing secretion, which causes dry eye to be one primary symptoms of the disease.

Chronic dry eye does not typically get better on its own, and often times it will get worse. Acupuncture is a very safe treatment, and apart from occasional bruising, its side effects typically include improved sleep quality, relaxation of tense muscles, and a sense of wellbeing.

Question_and_AnswerCan acupuncture increase moisture with dry eyes?

The beauty of acupuncture is that it does not build a dependency and in fact builds independence by helping to rebuild and restore function to various body systems.

A study published in the Chinese Journal of Practical Ophthalmology “found that patients receiving acupuncture plus lubricant eye drops had a 76.92% improvement in rate of dry eye symptoms. Patients receiving only lubricant eye drops had a 53.85% improvement. Tear film stability improved significantly with acupuncture. Patients receiving acupuncture plus eye drops had a tear film break-up time of 4.03 seconds compared with 2.11 seconds for the eye drop only group.” This means that acupuncture resulted in increased tear production and slower tear evaporation, so tears last longer.

Another study, published in Ophthalmology Times, found that acupuncture “significantly improved patients’ subjective assessment of dry eye symptoms, was associated with significant reduction in use of artificial tears at six months, and its benefits lasted for 9-12 months.”

Having an autoimmune disease, like Sjögren’s, can be stressful and overwhelming at times, often leading to poor sleep quality. All of these work against creating and maintaining healthy levels of serotonin, which is fundamental to healthy tear production.

Receiving regular acupuncture helps maintain healthy serotonin levels, as well as to decrease inflammation, increase circulation, and stimulate the nervous system to focus on a specific region, such as the eyes.

What does this mean for Sjögren’s patients?

It means that although you have Sjögren’s and may always have to work to maintain a reasonable number of tears, a combination of diet, stress management, and acupuncture may be able to minimize and help keep your symptoms at bay.

Dr. Townsend, adjunct professor at the University of Houston College of Optometry, says that “the potential patient benefits of acupuncture suggests that, at the very least, we should consider contacting an acupuncturist and explore working together as a possibility.”

Acupuncture has become so popular in the past few years that everyone is adding it to their list of services. Look for a National Certification Commission for Acupuncture and Oriental Medicine (NCCAOM®) board certified acupuncturist who has a minimum of four years of formal training and countless hours of clinical experience to ensure the best possible experience.

by Chris Leininger, DACM (c), Dipl. Ac. & ABT (NCCAOM), L.Ac., Founder and Director of Pure Health Acupuncture, LLC in Brazil, IN.

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

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Topics: Dry Eyes, Sjogren's, Treatment, coping with sjogren's, Natural Treatments, Acupuncture Treatment

World Sjögren's Day 2019

Posted on Wed, Jul 03, 2019

WorldSjogrensDay_logo

 On July 23rd, the Sjögren's Syndrome Foundation (SSF) invites you to participate in World Sjögren's Day - the perfect opportunity for people to come together to raise awareness about this devastating disease.

World Sjögren's Day was established by the SSF more than a decade ago and is the birthday of Dr. Henrik Sjögren (who first identified the disease in 1933). More importantly, it is meant to put a face on the millions of people who live with this disease and for everyone touched by the disease to come together to conquer the complexities of Sjögren's. 

World Sjögren's Day is also a valuable vehicle to educate others about the disease; it is a reason to donate or help raise funds to further Sjögren's research and education; and it draws attention to the impact Sjögren's has on people around the world!

2019 WSD collage - 1

During the month of July, YOU can help make a difference:

  • Share Your Story & Raise Funds: Create a personalized fundraising page and share why this cause is so important to you. Then ask your family and friends to support your efforts by making a donation to help conquer the complexities of Sjögren's.
  • Help Raise Awareness: Talk about Sjögren's with the people in your life. Share your personal story or that of a loved one with family, friends, neighbors or co-workers. Educate those around you about the disease. You can use this fact sheet to help.
On World Sjögren's Day, and all month long, join with others to have your voice heard and help conquer the complexities of Sjögren's. TOGETHER, we can make a difference!

Topics: World Sjogren's Day

Did You Miss the 2019 Sjögren's Conference?

Posted on Sat, Jun 29, 2019

2019 NPC CDIf you missed the SSF 2019 National Patient Conference, you can now get all the vital information you need in an audio format!

Seven of our most popular talks from the Sjögren's National Patient Conference held in Woburn, Massachusetts, are available for purchase. Each talk is 30-40 minutes long and comes with the handouts used by the presenter so you can follow along.

 

Available Audio Talks from the 2019 National Patient Conference:

  • The Complexities of Sjögren’s: An Overview, by Theresa Lawrence Ford, MD
  • Oral Manifestations of Sjögren’s, by Vidya Sankar, DMD, MHS
  • Fatigue and Sjögren’s, by Donald E. Thomas, Jr., MD
  • Understanding Blood Changes and Lab Results, by Alan N. Baer, MD
  • Ocular Manifestations of Sjögren’s, by Esen K. Akpek, MD
  • Nutrition, Wellness and Autoimmune Disease, by Lauri Lang, RDN, LDN
  • How Sjögren’s Can Impact the Central Nervous System, by Edward A Maitz, PhD

Click here to view audio downloads  from SSF National Patient Conferences 

Click here to view audio CDs  from SSF National Patient Conferences 

(You must be logged in to purchase at the Member Price. Double check that you are receiving the correct price before finalizing your purchase.) 

These audio presentations are an excellent way to have a permanent resource with some of the most vital information available to Sjögren's patients. Purchase just the talks you want to hear or purchase the whole set! 

Click here to order one of our available 2019 talks or you can order by calling our office toll-free at 1-800-475-6473.

Topics: Nutrition, Dry Mouth, Dry Eyes, Symptoms, National Patient Conference, #ThisIsSjögrens, Sjögren’s, Central Nervous System

A Caregiver's Reflection

Posted on Wed, Jun 12, 2019

CaregiverToday is not terribly different from any other day. The day begins... slowly.
Introducing a reference to time...not recommended.

Because there is no way to know how the patient will feel. Will it be a sick day? Will it be a pain day? Will it be both? Too uncomfortable for breakfast?

Questions.
Questions are not helpful.
Rather, just know what to do, know what to say.

And find the sunshine. Project happy thoughts. (no questions). Everything hurts.

The role of a caregiver is demanding, unselfish and ever-present. The role requires an ability to not just listen but hear and then measure the appropriate response. Because the patient does not want help with everything. They still want to preserve whatever bit of independence they can, why, because they have lost so much. The tendency is to react, to offer to do everything...don’t do that, the patient needs to retain any degree of independence they can.

It was not always like this.

The patient used to be able to do so much more. The patient was able to do everything. Clean the house, go for a run, take an exercise class, take a spin class, work in the garden, get-up-n-go, have a job, have a schedule.

Over the many years of battling Sjögren’s, so many therapies and medications have been tried. And while the disease chose its own paths of advancement, the therapies and medication side effects imposed their own blend of affect, interaction, ineffectiveness and ultimately uselessness.

The search for better and more effective treatment is endless. An infinite amount of time is spent reading blogs, web sources and drug explanations. Visits to specialists have become routine. The challenge in each encounter is to both cram as much background in as possible to set-the-table (mindful of the allowable 11-minute interval) then mine for gems that can be actionable, that can deliver hope.

Now, as difficult as managing the total body sickness, overcoming crushing fatigue, containerizing and filing pain, the sense of loss trumps all. The feeling of what was this body, what activities used to be possible, a job, housework, time with friends, time with family, possessing the energy to live...it’s all different, it’s not the same.

But. The patient looks fine.
What?
The patient looks good.
I know the depth of the battle, the dimension of sickness, the crush of pain, but no one else can see it. I know the effort to be ready-to-go is an extraordinary effort. Everything hurts. The shower water hurts. Standing on bare feet hurts. Food hurts.

And so we go places. We see people. And people ask the patient: “how are you?” “you look good!” “you look better.” “you sound better.” Hmm. Patient replies, “I’m fine.”

Next comes the judgment part. The patient looks good so the patient must be fine.

So much loss.
So many things have been taken away by Sjögren’s. Friends don’t know what to say, many stay away. Friends remain out-of-touch because they have been unable to listen, to comprehend, to empathize. And this may even apply to family. They arrive at the same point, unable to listen, to comprehend, to empathize. Then, when choices are made for travel, travel to locations that exclude the patient, the feedback is “we did not think you could handle it," or “we did not want to be a burden."

So much loss.
Sadly, family is precisely what the patient needs. The presence of family serves as fuel to flush the fatigue, to silence the body sickness, to file the pain away. Here is where you come to a fork in the road: to be honest with friends and family as to the level of sickness, the level of life’s change, or, rather, choose to withhold, to internalize, to privatize as insulation to prevent any further pain, the pain of loss.

Loneliness sets in. For the patient, loneliness that few, maybe no one, understands what living with Sjögren’s is like. No doctor, no specialist, no pharmacist...no one knows. The same holds true for the caregiver. Dare we say, “what about me?” Does anyone know what it’s like to watch a person you love slowly disintegrate? Does anyone understand the feelings we have, the helplessness, the fear, the hurt, the sadness, the guilt, the loneliness? We are bystanders with a close-up view of the tick-tock disease progression, the effect of treatment side effects, the expression of discomfort, of sick, of pain, yet powerless without tools to help.

I have used the term right-sizeto describe the types of activities we can do. The plans I make (suggest) are right-sizedto the level of ability of the patient. Forget the things we used to do, or more accurately stated, can no longer do, rather, “let’s go shopping,” “let’s go for a walk,” “let’s go to a movie.” As a caregiver, I have right-sizedmy activity to the mutually acceptable level of the patient.

And yet, we stay positive, we stay strong, we stay resolute because there is no other choice.

To all the caregivers out there, you possess the power to instill the seed of possibility, of promise and of hope. Smile.

This article 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: #ThisIsSjögrens, Sjögren’s, Care Giver Burnout

Exploring Sjögren’s

Posted on Thu, May 02, 2019

Exploring_Sjogren_logo_finalExploring Sjögren’s is the SSF's new YouTube video series that explores Sjögren’s and the daily lives of our patients. We have created six episodes for season one that discuss Sjögren’s as a disease and the work being done to help conquer the complexities of Sjögren’s. In addition, two of the episodes specifically focus on living with Sjögren’s and how our patients cope. The first episode premiered on April 30th, with a new episode airing each following Monday. The final episode of season 1 will be airing on Monday, June 3rd. Catch up on all episodes in season one and click here to visit our Exploring Sjögren’s YouTube page.

Special thanks Brad Lemack from Lemack & Company, our Executive Producer, and all the physicians, researchers and patients who took part in season one of this important project! Click here to view our first episode.

 

Episode 1: What is Sjögren's 

 

Episode 2: The Impact of Sjögren's 

Episode 3: Pregnancy and Sjögren’s

Exploring Sjögren's Episode 3

Episode 4: Sjögren’s Research

Research

Episode 5: Tips for Living with Sjögren’s

Episode 5

Episode 6: Clinical Trials and Sjögren’s

Exploring Sjögren's Episode 6

Thank you for watching season one of our new YouTube series!

 

Topics: Treatment, #ThisIsSjögrens, Sjögren’s, Exploring Sjögren's

Conquering the Complexities of Sjögren's

Posted on Fri, Apr 12, 2019

April is Sjögren’s Awareness Month and with an estimated four million Americans suffering from Sjögren’s, both men and women of different ages and ethnicities, it is one of the most prevalent but still lesser known autoimmune diseases. Sjögren’s is also not a “cookie cutter” disease and affects patients differently. This can lead to a misunderstanding about the seriousness of the disease and be extremely isolating for those living with it.

Using our new 2019 theme, Conquering the Complexities of Sjögren's, we are going to expand our #ThisIsSjögrens campaign to help others visualize the vast impact of the disease by posting a new patient story every day in April. While the daily posts will each give one small glimpse into living with Sjögren’s, by the end of April, we hope these 30 posts will shine a light on Sjögren’s and ensure a greater understanding of this complex disease.

We encourage you to use Sjögren’s Awareness Month as a way to talk about the disease. Every day is an opportunity to start a conversation about living with Sjögren’s and how it affects you. The more others understand, the more support you can find. Click here to learn more.


Day 1

Candi B., 46 (diagnosed at 43), Disabled (Former payroll manger)

My most difficult Sjögren's symptoms is living with 49% lung function. I wish people knew how dangerous it is to call this only a “dry eye and dry mouth disease.” 

Click here to learn more about our April Awareness theme, Conquering the Complexities of Sjögren's.

Day 2

Jen Day 2

 

Jen B., 46 (diagnosed at 45 after 3 years of being misdiagnosed)

My most debilitating Sjögren's symptoms are pain, fatigue & itchiness. I wish people knew that just because I’m smiling & getting things done, it doesn’t mean I’m not in excruciating pain.

As a patient, remember to put yourself first. Refusing to run yourself into the ground isn’t selfish. Sjögren's Warriors have compromised immune systems, which is invisible.

Click here to learn more about our April Awareness theme, Conquering the Complexities of Sjögren's.

Day 3

Day 3 Randy

Randy K., 49 (diagnosed during mid-thirties)

I wish people understood that this complex disease affects both men & women of all ages. As a Sjögren’s patient, remember to stay informed and keep asking questions. Never assume that things can’t change.

Click here to learn more about the SSF & symptoms of Sjögren's.

Day 4

Day 4

Jaeden, 9 (diagnosed at 6)

My most difficult symptoms are body aches, dry mouth & muscle pain. The hardest part of living with Sjögren's is that people don’t understand when I need to take breaks.

Click here to learn more about pediatric Sjögren's.

Day 5

Day 5

Erin B., 34 (diagnosed at 24)

Sjögren’s means that outwardly I look normal but some days I’m so exhausted I can’t get out of bed, which isn’t an option as a mom. It’s hard when people don’t understand it’s not a “tired” you can fight through by having some coffee or taking a nap.

Click here to learn more about fatigue and Sjögren's. 

Day 6

Pricilla Day 3 

Priscilla A., 43 (diagnosed at age 41)

Sjögren’s means that my disease cannot be treated by just taking a pill.

Click here to learn more about treatment options and coping methods with Sjögren's

Day 7

Day 7 Allison

Allison, 24 (diagnosed at 23)

My most difficult Sjögren's symptoms are brain fog, fatigue and constant aches & pains. I wish people knew that living with this disease means my smile hides more than you know.

Click here to learn more about brain fog and Sjögren's.

Day 8

Image may contain: 1 person, text

Leah G., 38 (diagnosed at age 35)

Sjögren's means I live with constant fatigue, joint/ muscle pain, and brain fog. I wish people knew to be patient me. I only complain when I'm feeling really bad so know that if I'm complaining, it means I feel terrible.

Click here to learn more about how to talk with family and friends about Sjögren's.

Day 9

Image may contain: 1 person, smiling, eyeglasses, text and closeup

Sally V., 69 (diagnosed at age 62 after 20 years of undiagnosed symptoms)

Most of my body has been affected by this disease. My best tip for Sjögren's patients is to allow yourself rest but don’t give up. And thank you to the SSF! The Foundation has changed the whole outlook for patients.

Click here to learn more about symptoms of Sjögren's.

Day 10

Image may contain: 1 person, smiling, standing and outdoor

Ashlyn A., 23 (diagnosed at age 21)

My most difficult Sjögren's symptoms are living with cystic lung disease, low white blood cell counts & dry eyes.

I wish people knew that it’s not easy living with a chronic disease, but I’m still me. I have cysts in my lungs, but I won’t give them to you. I want to workout, but it’s hard sometimes with my breathing. I was able to have lung surgery & then get married four months later like nothing happened. I’m still me. I’m just living with Sjögren's.

Click here to learn more about Sjögren’s-Related Lung Disease.

Day 11

Image may contain: 1 person, smiling, selfie and closeup

Tamika L., 40 (diagnosed at 32)

I wish people understood that Sjögren’s can affect the entire body. Although this disease seems invisibles to others, don’t ignore symptoms. Stay educated & take charge of your health!

Click here to learn more about how to be your own best patient advocate by gaining a thorough understanding of Sjögren's and signing up as an SSF member to receive our patient newsletter, The Moisture Seekers.

Day 12

Image may contain: 1 person, eyeglasses and closeup

Grace K., 18 (diagnosed at age 17)

Brain fog is one of my most difficult Sjögren's symptoms. I find myself constantly forgetting things & often stare off for long periods of time, but this disease does not define who I am. Eliminating gluten & dairy from my diet has helped me manage my symptoms.

Click here to view resources about chronic illness and diet, like “Grain Brain,” in the SSF bookstore.

Day 13

Kelly Day 13

Kelly P., 50 (diagnosed at 46 after 8 years of being misdiagnosed) 

Sjögren’s means I live with fatigue, neuropathy, irritable bowel syndrome (IBS), and migraines. If you know someone with Sjögren’s, offer your time or lend a hand because while many symptoms are invisible, we still need support.

Click here below to learn more about headaches and Sjögren's.

Day 14

Kiana T Day 14

Kiana T., 30 (diagnosed at 23)

My most difficult Sjögren's symptoms are inflammation in my fingers, chronic pain throughout my body and brain fog.

Click here to learn more about chronic pain & Sjögren's.

Day 15 

Daty 15 Roger

Roger T., 50 (diagnosed at 48)

My most difficult Sjögren's symptoms are joint pain, burning muscles, dry eyes and dry mouth.

Sjögren's is often described as a disease that mostly affects women and causes dry eyes & mouth, but people don’t realize it also affects men and a person’s whole body. I have difficulty walking because of numbness/burning in my toes and legs.

Click here to learn more about peripheral neuropathy and Sjögren's.

Day 16 

Yvette Day 16

Yvette Y., 42 (diagnosed at 28)
 
Sjögren’s means living with tooth decay, joint pain, fatigue and having to explain what your disease is to everyone. It’s discouraging to be in the ER and need to describe Sjögren’s to your doctors/nurses. My best tip is to keep talking about the disease. Our pain, our story connects us and that helps.
 
 
Day 17 
 
Day 17
 
Jeri J., 29 (diagnosed at 28)
 
My most difficult Sjögren's symptoms are extreme fatigue, dry mouth and dry eyes.
 
As a basketball coach, it’s hard to manage fatigue that can’t be “pushed through,” like the athletic world teaches. My best Sjögren's tip is to make boundaries and stick to them. The health risks of letting yourself get run down isn’t worth it.
 
 
 Day 18 Susan
 

Susan B., 63 (diagnosed at 60)

I wish people knew that even though I’m still active, I often don’t feel well because of Sjögren's fatigue, pain & dryness. While I don’t want to seem like I’m complaining to family & friends, I know not talking about my health perpetuates their misunderstanding about the disease.

Remember to talk about Sjögren's in your life & connect with other patients who understand living with this disease. 

We hope you will connect with the SSF by becoming a member & receiving our newsletter (https://www.sjogrens.org/home/get-connected/become-a-member) or joining our online community SmartPatients (https://www.smartpatients.com/partners/ssf).

Day 19
Day 19 K

Keri F., 41 (diagnosed at 39)

My most difficult Sjögren's symptoms are neuropathy, dry throat, dry mouth & fatigue. I wish people knew how different one day can be from the next when living with this disease. Feeling “ok” enough to put makeup on can be a victory.

Remember to take the to care for yourself. It makes living with Sjögren's a little less hard

Click here to learn more about Sjögren's reflux & your throat.

Day 20

Day 20 Grace

Grace T., 13 (diagnosed at 9)

My most difficult symptoms are dry red eyes, joint pain, neuropathy & dryness. I wish people knew that Sjogren’s is a serious disease that is often underestimated.

Click here to learn more about this complex disease.

Day 21

Cleana M Day 11

Cleana M., 45 (diagnosed at 30)

My three most difficult Sjögrens symptoms are joint pain, peripheral neuropathy & difficulty swallowing.

Click here to learn more about swallowing medications with dry mouth. 

Day 22

Ray Day 22 

Ray H., 54 (diagnosed at 44)

I wish people understood that men can also be diagnosed with Sjögren’s. My most difficult symptoms are dry mouth, dry eyes, peripheral neuropathy & fatigue. My best advice is to pace yourself, be balanced with commitments & remember that it’s ok to say “no”.

Click here to learn more about Sjögren's dry mouth.

Day 23

Day 23 Natasha

Natasha G., 28 (diagnosed at 25)

My most debilitating Sjögren's symptoms are total body inflammation, autonomic dysfunction & widespread pain. Remember to advocate for yourself. I started having symptoms in high school but because of my age, no one even considered this disease. I had to advocate for myself to be tested ten years later. With doctors, friends & family, remember to always advocate for yourself in order to get the best quality of care & support.

Click here to learn more about how to be your own best advocate & take control of your health by receiving our newsletter & becoming an SSF member.

Day 24

Amy Day 24

Amy R., 50 (diagnosed at 39)

Sjögren's means living with joint pain, fatigue, migraine headaches & brain fog, but the most frustrating part of this disease, is trying to find your new normal when you look normal but don't feel that way! I wish people understood how debilitating Sjögren's can be. Some days I can barely drag myself out of bed because of joint pain & headaches. 

Click here to learn more about joint pain & Sjögren's.

Day 25

 Stephanie Day 25

Stephanie B., 29 (diagnosed at 20)

I’m currently pregnant with my second son. I had no idea during my first pregnancy that Sjögren’s can cause fetal block. I’ve had a few flare ups already & am having weekly fetal echo exams, but I’m thankful for my husband, team of doctors & support group.

I wish people knew that Sjögren’s is typically a progressive disease that will get worse with time, which scares me.

Click here to learn more about pregnancy & Sjögren's.

Day 26

Day 26

Rebecca B., 37 (diagnosed at 32)

I wish more people understood the seriousness of this complex disease. Last month I was diagnosed with MALT lymphoma of the salivary gland. If you are diagnosed with Sjögren’s, know you are not alone in this fight!

Click here to learn more about lymphoma & Sjögren's.

Day 27 

Day 27 Amy

Amy C., 42 (diagnosed at 36)  

I wish people understood that Sjögren’sis all encompassing. I have become so much better at managing this disease in the last 6 years, but I know I have a long way to go. While Sjögren’ssucks, life doesn’t have to. I keep moving because I am strong, and I have Sjögren’s.  

Click here to learn more about the significant physical & emotional burdens of Sjögren’s.

Day 28

Day 28 Cam

Cameron P., 15 (diagnosed at 14) 

My most difficult Sjögren’s symptoms are joint/muscle pain, fatigue, chronic meningitis & multiple organ involvement requiring hospitalization. I wish people understood that this is NOT just a disease of women over 40. My best tip is to listen to your body, take your time & a positive attitude is key!

The SSF sponsors over 65 groups throughout the United States & Canada. In addition to our local support groups, the SSF supports 3 special support groups: patients under 40, men with Sjögren’s & pediatrics. Click here to learn more about Sjögren’s support groups.

29

Maria Day 29

Maria G., 39 (diagnosed at 28)

My three most difficult Sjögren's symptoms are dry mouth (including swollen gums & sore throat), brain fog & muscle pain.I wish people understood that many symptoms of this complex disease cannot be seen, like extreme fatigue. A good diet, exercise routine & mediation has helped me but there’s no cure or single treatment for this disease.

Click here to learn more about diet & Sjögren's

Day 30

Day 30

Darolyn S., 34 (diagnosed at 27 after being misdiagnosed since her teenage years)

My most debilitating Sjögren's symptoms are neuropathy, chronic hives, unpredictable flares, fatigue & a low white blood cell count causing me to be more susceptible to infections.

When I’m feeling my worst, my initial desire is to disconnect from other but my bet tip for living well with this complex disease is to work at maintaining your close relationships. While it is difficult for others to understand this often-invisible disease, my hope is that more friends & family members of patients try to learn more about Sjögren's.

To end Sjögren’s Awareness Month, the SSF is premiering the first episode of “Exploring Sjögren’s” a new YouTube series to explore the daily lives of patients, while we also discuss the work being done to help conquer the complexities of this disease.

Click here to see the first episode on our new YouTube channel.

Exploring Sjögren's

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

 

Topics: April Awareness Month, #ThisIsSjögrens

Sjögren's Awareness Month 2019!

Posted on Mon, Apr 01, 2019

Conquering Sjögren's

#ThisIsSjögrens 

April is Sjögren’s Awareness Month!  Sjögren’s is one of the most prevalent but still lesser known autoimmune diseases. It is also not a “cookie cutter” disease and affects patients differently. This can lead to a misunderstanding about the seriousness of the disease and be extremely isolating for those living with it.

Using our new 2019 theme, Conquering the Complexities of Sjögren's, we are going to expand our #ThisIsSjögrensonline campaign. We will post every day in April, using one or more of our social media channels, to create a better understanding of the disease. While the daily posts will each give one small glimpse into living with Sjögren’s, by the end of April, we hope these 30 posts will help others visualize the vast impact of the disease.

Help us conquer the complexities of Sjögren's this April because every day is an opportunity to start a conversation about Sjögren’s and how it affects you. The more others understand, the more support you can find. 

2019_FB_Frame_02Get Involved!


Day 1
Candi 2019 April

Candi B., 46 (diagnosed at 43), Disabled (Former payroll manger)

My most difficult Sjögren's symptoms is living with 49% lung function. I wish people knew how dangerous it is to call this only a “dry eye and dry mouth disease.” Remember to advocate for your health before this disease becomes fatal. #ThisIsSjögrens

Click here to view our daily  April Awareness campaign on Facebook!

If you do not use social media, click here to view the daily posts.

                                             

Topics: Sjögren’s Awareness Month,, April Awareness Month, #ThisIsSjögrens, Sjögren’s

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