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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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

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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

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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

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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

It's almost Sjögren's Awareness Month!

Posted on Fri, Mar 15, 2019

Conquering Sjögren's

#ThisIsSjögrens 

April is Sjögren's Awareness Month and we hope you will join us in educating the public about this complex disease and how it affects those who are living with it. Even though Sjögren’s awareness continues to rise, it is still one of the most prevalent but lesser known autoimmune diseases. This can lead to a misunderstanding about the seriousness of the disease.

Using our new 2019 theme, Conquering the Complexities of Sjögren's, we are going to expand our #ThisIsSjögrens social media campaign to help others visualize what it is like for patients living with the disease.   

We will post every day in April, using one or more of our social media channels, to create a better understanding of the disease. To help portray the entire patient experience, the SSF will be using Sjögren's facts along with real patient stories to help close the gap between the reality of Sjögren’s and the perception that many non-patients have. 

Help us conquer the complexities of Sjögren's this April by following our #ThisIsSjögrens social media posts. 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 disease.

Let Your Voice Be Heard!

SSF This Is Sjogren'sIf you would like you and your story can be featured in this year's campaign, please email us your answers from the questionnaire below and a picture of yourself, to tms@sjogrens.org with the subject line: “April Awareness Month 2019.” 30 stories will be featured in this year's campaign. 

 


#ThisIsSjögrens 2019 Questionnaire
(Please email your answers and a picture of yourself to tms@sjogrens.org.) April FB Frame

Name (The Foundation will only publish first names):

Email: 

Current age: 

Age when diagnosed (or What is your connection to the disease):

City/State:

How would you describe yourself in one word (teacher, graphic designer, stay at home parent): 

What are your top three most difficult symptoms to live with:

What is your most difficult symptom that people don't understand: 

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

What’s your best Sjögren’s tip: 

Don’t forget to include a picture of yourself!

                                             

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

Valentine's Day Giveaway!

Posted on Thu, Feb 14, 2019

*****
Congratulations to our 2019 SSF Valentine's Day Giveaway Winners! The winners are Sandy, 
Sabrina and Marianella. The Foundation has privately emailed the three winners.

Thank you to everyone who supported the SSF by participating in our giveaway! 
*****

 

Valentine's Day 19

To celebrate the season of love, the SSF is holding our annual Valentine's Day giveaway to   Sjö how much we appreciate you! Read below to learn how to enter and win one of three complimentary registrations to the 2019 SSF National Patient Conference! 2019 SSF NPC Cover

How to Enter:
To enter, all you have to do is comment "Happy Valentine's Day" below by 11:59pm EST today- February 14, 2019. The Foundation will privately email the three winners on Tuesday, March 5, 2019. 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. 

 

 

The 2019 National Patient Conference
April 5-6, 2019
Hilton Boston/Woburn, Woburn, Massachusetts

Presentation topics will include:

• The Complexities of Sjögren’s: An Overview
Fatigue and Sjögren’s
Oral and Ocular Manifestations of Sjögren’s
Sjögren’s Clinical Trials Update
Understanding Blood Changes and Lab Results
Living with Sjögren’s: A Patient Panel
How Sjögren’s Can Impact the Central Nervous System
Nutrition, Wellness and Autoimmune Disease
• And more!

Click Here to View the 2019 SSF Conference Brochure with Schedule & Printable Registration Form

Topics: National Patient Conference, Sjögren’s

A Diminished Sense of Taste with Sjögren’s

Posted on Fri, Feb 08, 2019

Research has shown that Sjögren’s patients have an increased incidence of taste disorders – both diminished taste (hypogeusia), loss of taste (ageusia), and altered or abnormal taste (dysgeusia). A great deal of the problem comes from a deficiency of saliva. Flavors in food need to be in solution to be fully tasted; that is one of the important functions of saliva. Saliva also helps protect the mucosa and oral structures, including the taste buds. Finally, saliva helps carry food and flavors across the tongue and the taste buds where it can be tasted. Without adequate saliva, there are many ways that taste can suffer.

A full evaluation is recommended since it has been reported that taste also may be affected by medications and by a number of medical conditions. Clinical examination and diagnostic procedures may identify other potential causes for taste complaints such as nasal polyps, viral infection, oral candidiasis, neoplasia, malnutrition, metabolic disturbances, or chemical and physical trauma. Also, complaints of taste loss need to be differentiated from alterations in flavor perception, which is primarily related to your sense of smell.

There is no specific treatment for the taste disorders found in Sjögren’s. However, using liquids to wet the food in your mouth may help increase the taste. You can also try increasing the seasoning on foods and see if it improves the taste. However, be careful not to use excessive amounts of sugar or salt, which can have negative health consequences. Since a reduction in salivary flow may concentrate electrolytes in the saliva, resulting in a salty or metallic taste, drinking plenty of fluids while eating may help reduce dysgeusia.

Although it is controversial, some authors recommend zinc supplements in cases of taste problems. Using an over-the-counter preparation like Z-BEC, one tablet per day, will assure that you are receiving adequate amounts of zinc.

by Philip C. Fox, DDS

This article 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: Dry Mouth, Saliva, Thrush, Oral Candidiasis (Thrush), Sweling in the mouth, Loss of Taste

A New Vision and Mission for the SSF

Posted on Wed, Jan 30, 2019

SSF 35 yearsThe Sjögren's Syndrome Foundation (SSF) began in 1983 in the home of Elaine Harris, a patient. For the past 35 years, the SSF has been honored to support all Sjögren’s patient and the mantra of Elaine—“founded by a patient, for patients” —remains the center of what we do by ensuring that the patient voice is never lost in our efforts.

Over the years, the work of the Foundation has grown and adapted to meet the needs of both current patients and future generations. As we continue to expand our reach and scope as the disease evolves, the SSF volunteer Board of Directors wanted to clearly communicate our vision and what we want to accomplish in the coming years.

Today, the SSF is proud to announce that after months of planning and the involvement of many volunteers, patients, researchers and physicians, we have set a new vision statement.

SSF Vision Statement:

“To create a community where patients, healthcare professionals and researchers come together to conquer the complexities of Sjögren’s.”

With a new vision, the Foundation decided to update our mission to better reflect our current and future goals and aspirations for the SSF. 

SSF Mission Statement:

     • Support Sjögren’s patients and their loved ones through education, resources and services
      • Provide credible resources and education for healthcare professionals
      • Serve as the voice for all Sjögren’s patients through advocacy and awareness initiatives
      • Lead, encourage and fund innovative research projects to better understand, diagnose and treat Sjögren’s


The new mission and vision statements underscore the SSF’s commitment to supporting patients, while acknowledging the truly complex nature of the disease. The core values from our previous mission statement that we had for 35 years remains the same: educate patients and their families about Sjögren's, increase public and professional awareness of Sjögren's, and research into new treatments and a cure. The updated mission encompasses those core values but includes our work in advocacy, professional educational resources and patient programs, to better portray what work needs to be done today in order to conquer this debilitating disease.

January TMS 2019 CoverThe accomplishments of the past 35 years have been incredible and the SSF has recently seen extraordinary results from our efforts. It was only a year ago that we announced surpassing our 5-Year Breakthrough Goalto reduce the time of diagnosis by 50% in 5 years. Taking the average diagnosis time from over 6 years to 2.8 years.  Back in 2012, when we established the goal, we were told by experts that it would be very hard to reach.   But the SSF staff and volunteers knew that the Foundation couldn’t sit on the sidelines and let patents go years without having a proper diagnosis. 

We also knew, that by getting patients diagnosed quicker, patients could then get the appropriate treatment to hopefully prevent and/or be monitored for serious complications such as corneal scarring, loss of teeth, internal organ involvement, misdiagnosed neuropath pain, profound fatigue, or chronic upper respiratory problems, to just name a few. Systemic issues could also be caught earlier and mitigated. With our new mission and vision, it is still our hope to have Sjögren’s at the top of physician’s minds when they hear a patient complaining of dry mouth, dry eye, fatigue, or joint pain, because no patient should have to suffer from the lack of a physician’s awareness and education. This is why our awareness efforts will surely continue. Other recent achievements include: writing and publishing the first-ever clinical practice guidelines on how to treat and manage Sjögren’s patients with Phase 2 currently underway; our work in getting closer to developing a drug to treat all Sjögren’s symptoms; and efforts to increase awareness and educate healthcare professionals to ensure Sjögren’s is not forgotten in the research, pharmaceutical or physician communities.

We know our work is far from over, but we have also seen what we are able to accomplish together! We are seeing the disease being taken more seriously in the medical community. The Foundation will continue building on our work to ensure Sjögren’s is not forgotten in the research, pharmaceutical or physician communities.  We are committed to accelerating the development of better diagnostic, management and therapeutics that will have the greatest potential impact on improving the quality of life for Sjögren’s patients. 

The SSF Board of Directors and staff are humbled by your support and what we have been able to achieve together. From our patient volunteers to our professional educators and corporate partners, thank you to everyone who has helped us along our way and who are continuing to stand with us as we look to the future. We encourage you to look for opportunities in this new year to become more involved with the Foundation and stand up for all patients, both current and future generations.

The updated mission and new vision of the Sjögren’s Syndrome Foundation will allow us to successfully forge ahead as we work to conquer the complexities of Sjögren’s.

Together we can make our vision a reality!

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The information from this post was first published in The Moisture Seekers, SSF's member newsletter.

 

Topics: 50in5: Breakthrough Goal, Clinical Practice Guidelines, Sjögren’s

15 Types of Sjögren’s Fatigue

Posted on Thu, Jan 03, 2019

Fatigue

by Teri Rumpf, Ph.D.

This is the second revival of an essay I wrote fifteen years ago, originally entitled 11 Types of Fatigue. Once again, I’ve been asked by the Sjögren’s Foundation to give it new life. I thank them for the opportunity and hope that in the fifteen years that have passed since the original essay, there is increased acknowledgment of fatigue as a major factor in Sjögren’s and a growing knowledge that Sjögren’s is a systemic disease. My list of fatigue now numbers fifteen different subtypes. It is by no means meant to be exhaustive…. the bulk of the article remains the same as it did in both 2003 and 2013.

A quick update: The friend mentioned below was my first friend with Sjögren’s and as such, has always been very special to me. We still speak in a kind of shorthand, as I do with most if not all of my Sjögren’s friends. The friends I have made over the years are the best outcome of this disease. As a group, we understand what it means to say that we are “fine.”  We know that when we say we are “tired,” it means really tired, i.e. that something is going on, something out of the ordinary, beyond the everyday feelings of fatigue. “How are you?” is not a question in our general culture. It is a greeting. As such, it deserves a real answer only in those circumstances where there is an understanding that the person asking truly wants to know. 

For those of you who haven’t seen it, here is most of the original article with a few additions and revisions:

"How are you?" I asked a friend who has Sjögren’s. "Tired," she said, "how are you?" "Tired," I replied, knowing we understood each other. We were talking about a special brand of fatigue. Later that day, a friend who did not have Sjögren’s asked me the same question. "How are you?" she said. "Fine" I responded, thinking it was the simpler way to answer a basically rhetorical question.

Not everyone with Sjögren’s suffers from fatigue, but many of us do. According to the 2016 Living with Sjögren’s survey done by the SSF, fatigue was the third most prevalent and disabling symptom of Sjögren’s. For me, fatigue has been a problem more disabling than dry eyes or dry mouth. I long for normal energy and the ability to sustain activity, any activity. I long for the kind of fatigue that gets better with a good night's sleep. I want to be able to do things spontaneously. I wish I did not have to pace myself or plan rest stops. I wish that I could just get up and go, but, reluctantly and somewhat resentfully, I know that fatigue is a permanent part of my life. Having decided that if you must live in a particular landscape, you should learn the subtleties of the territory. I've come up with the following subtypes. Your experience may vary:

  1. Basic fatigue: This is the inherent fatigue that I attribute to the inflammatory, autoimmune nature of Sjögren’s. It's with me all the time. It differs from normal fatigue in that you don't have to do anything to deserve it. It can vary from day to day but is always there. For me, there appears to be a correlation between this kind of fatigue and sed rate (ESR). When one goes up, so does the other. I don’t know how often this phenomenon occurs. I could also call this my baseline fatigue, which fluctuates and gets better or worse. All of the following are superimposed on this basic fatigue.

  2. Rebound fatigue: If I push myself too far and ignore the cues my body is sending me to stop and rest, my body will fight back. When I do more than I should, the result is an immobilizing fatigue. It comes on after the fact, i.e., do too much one day and feel it the next. If I push myself today, I very likely will have to cancel everything tomorrow. An extended period of doing more than I should will almost certainly cause a flare.

  3. Sudden fatigue: This 'crumple and fold' phenomenon makes me resemble a piece of laundry. It comes on suddenly, and I have to stop whatever I'm doing and just sit down (as soon as I can). It can happen anywhere, at any time. It is the kind of fatigue that makes me shut off the computer in mid-sentence. It is visible to those who are observant and know what to look for, even though I make gargantuan efforts to disguise the fact that it is happening.

  4. Weather related fatigue: Not everyone has this particular talent, but I can tell that the barometric pressure is dropping while the sky remains blue and cloudless. I feel a sweeping wave, a malaise, that sometimes lifts just after the rain or snow has started. Likewise, I know when a weather front is moving away, even while torrents of water are falling from the sky. I feel a lightening in my body and begin to have more energy. This kind of fatigue is accompanied by an increase in muscle aches and joint pain.

  5. Molten lead phenomenon: This fatigue is present when I open my eyes in the morning and know that it is going to be a particularly bad day. It feels as if someone has poured molten lead in my head and on all my limbs while I slept. My muscles and joints hurt and doing anything is like walking with heavy weights. It is often associated with increased symptoms of fibromyalgia and sometimes helped by heat and massage.

  6. Tired-wired: Tired-wired is a feeling that comes from certain medications, such as prednisone, too much caffeine, or too much excitement or perhaps it is just a function of Sjögren’s. My body is tired, but my mind wants to keep gong and won’t let my body rest.

  7. Flare-related fatigue: Flare-related fatigue is an unpredictable state of increased fatigue that can last for days or weeks. It may be caused by an increase in disease activity or an undetected infection. If the latter, it either resolves on its own, or eventually presents other signs and symptoms that can be diagnosed. Additional rest is essential to deal with this kind of fatigue, but rest alone will not necessarily improve it or make it go away. Once a flare begins, it is impossible to predict where it will go or how long it will last.

  8. Fatigue related to other physical causes: Fatigue related to other physical causes, such as thyroid problems or anemia or other diseases superimposed on Sjögren’s. This kind of fatigue makes you feel that you are climbing a steep hill when you are really walking on level ground. It may resolve once the underlying organic condition is diagnosed and treated. Thyroid problems and anemia are both common among Sjögren’s patients, but many other kinds of fatigue may be superimposed. Sjögren’s and fibromyalgia often co-exist, such that it is difficult to separate one from the other.

  9. Fatigue impairs concentration: Fatigue impairs concentration, precludes thought, and makes me too tired to talk, think or read. Fatigue robs me of memory and encloses me in a fog of cotton wool so thick I can't find my way out until the fog miraculously lifts. For me, brain fog goes hand-in-hand with other kinds of pernicious fatigue.

  10. Stress, distress, anxiety or depression: Stress, distress, anxiety or depression all can create a leaden kind of emotional fatigue that can be as exhausting as one due to physical causes. Although some people do not associate their increased fatigue with emotional states, many are aware of the effects of increased anxiety and depression, even if they cannot control what they feel. Intense emotion is very draining. Stress, anxiety and depression all are known to disrupt sleep.

  11. Fatigue that comes from not sleeping well: Some people with Sjögren’s have trouble both getting to sleep and staying asleep. Some wake up in the morning feeling as if they had never slept at all. Many aspects of Sjögren’s affect sleep: being too dry, in too much pain or malaise; multiple trips to the bathroom, the need for water or to put in eye ointment all deter a good sleep. Lack of restorative sleep increases fatigue. Fibromyalgia worsens when you don’t get a good night’s sleep. Chronic pain increases fatigue.

  12. Fatigue that comes with normal aging: I’m old enough for Medicare now and my friends are more tired too, although they seem to be able to do two or three or even four times what I can do on any given day. In fact, the gap between what they can do and what I can do just seems to be growing, despite my best efforts. It’s been a long time since I tried to keep up, but it still hurts that I can’t.

  13. Fatigue that comes from a chronic illness that just won’t quit: We’ve all heard the expression “sick and tired of being sick and tired” and that phrase truly captures what many of us feel. I would take it one step further. There’s a fatigue that comes with the uncertainty of a chronic disease. It’s a debilitating fatigue born of never knowing what will come next. The chronicity of Sjögren’s can wear me down and I have to make special attempts not to let it. When these attempts don’t work, I wait a while and try to find something else that distracts me from my illness.

    And two new ones:

  14. Fatigue that comes from trying to keep up with family and friends who don’t have a chronic illness: As much as I try, it just isn’t possible to keep up. I’m on a schedule that’s all my own, and as much as I fight it, it separates me from the people I love. I’m willing to compromise to do things their way, but my body won’t cooperate.

  15. Doctor Fatigue: I get very tired of spending my time in waiting rooms, having lab tests, and going to doctors. I don’t understand why I didn’t say this before. I’m sure it’s self-explanatory. Enough said.

It's difficult to explain the unnatural quality and intensity of Sjögren’s fatigue to someone whose only experience has been with what is normal. We're not talking about the same stuff. It’s apples and artichokes. Sjögren’s fatigue assaults everything I do. There isn’t a part of my life that hasn’t been touched by it. It is there even on my happiest days.

Because people don’t understand, it’s often misinterpreted. "Is it depression?" a health care professional who didn't know much about Sjögren’s asked me. I tensed. Was he saying it was all in my head? I began to get angry but then gave him the benefit of the doubt. I put my first reaction aside and decided he was trying to understand. I was relating something outside his frame of reference, and he was attempting to find a point with which he could identify.

When you describe Sjögren’s fatigue to someone who has never experienced it, you are asking him or her to think outside the box. You want them to understand an experience that is common to those who have Sjögren’s and many other autoimmune diseases but rare otherwise. Perhaps their first reaction will be negation or denial. While it’s always difficult to encounter expressions of disbelief, it is not uncommon.  I tried to see it as an opportunity to educate.

September TMS-1"No," I said to the doctor who asked about depression, "think of it as a never-ending flu that varies in intensity but never goes away." He grimaced.

This article was first published in the September Issue of The Moisture Seekers. Suggested reading: The Sjögren’s Syndrome Survival Guide, by Terri Rumpf, PhD, author of the "15 Types of Fatigue" article, and Katherine Moreland Hammitt, SSF Vice President of Medical & Scientific Affairs, this SSF best seller is often referred to as a “support group in a book."

Click here to view a sample issue of the newsletter.  If you’re not already a member of the SSF, please considering joining and 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.

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Topics: Depression, Brain Fog, Fatigue, Flare,, #ThisIsSjögrens, Fibromyalgia, Sjögren’s

Together we are making a difference in the fight against Sjögren's

Posted on Sun, Dec 30, 2018

35 years banner - year-end

 

 

 

 

 


As we approach the end of the year, I wanted to share some highlights from the past year that could not have been achieved without the generous support of our donors and volunteers. These are just some of the many things that we have been able to accomplish and we hope that you will choose to make a year-end donation so that we can further our efforts in the new year.


2018 highlights

SSF 5-YEAR BREAKTHROUGH GOAL

50-5_Logo_BW_-_no_logo_-_2The SSF was excited to share that we exceeded our Breakthrough Goal: to shorten the time to diagnose Sjögren’s by 50% in 5 years. In 2012, when we embarked on this ambitious 5-year goal the average time for a patient to receive an accurate diagnosis was nearly six years. Today, the new average time to diagnosis is 2.8 years, below our goal of 50%!  This important undertaking was to help the many patients suffering from symptoms but still had no definitive diagnosis. These efforts to increase awareness and education in the health care community also served to improve the care of patients who had already been diagnosed with Sjögren’s.

FURTHERING SJÖGREN’S CLINICAL PRACTICE GUIDELINES

CPGs phase 1The SSF has been working on Phase 2 of the Rheumatology and Oral Clinical Practice Guidelines. These guidelines will focus on five new topics on the systemic manifestations of Sjögren’s, including: pulmonary; peripheral nervous system; central nervous system; lymphomas and other blood cancers; and vasculitis. Over 100 healthcare providers have been recruited to assist in these efforts which include a wide variety of specialists who've not traditionally been involved with Sjögren’s or the SSF. This important initiative will have enduring impact on ensuring that providers have crdible information on how to manage and treat their Sjögren’s patient. This initiative will also start to ensure that patients will receive the appropriate and consistent care they deserve.

 

THE SSF IN ACTION

issseularThe SSF appreciates the opportunity to attend and participate in various meetings and events throughout the year to help raise awareness around Sjögren’s, impact Sjögren’s research and most importantly, to serve as the voice for allSjögren’s patients. This past year, the SSF was involved in events held by the National Health Council, the U.S. Food and Drug Administration,  the National Institute of Dental and Craniofacial Research and National Institutes of Health, the American Association for Dental Research and the Illinois College of Optometry. There were also a number of meetings at which the SSF led and/or played a vital role. These include the International Symposium on Sjögren’s Syndrome in Washington, DC, the HarmonicSS General Assembly in Greece and the European League Against Rheumatism’s Annual European Congress of Rheumatology in the Netherlands.

RESEARCH GRANTEES

2018 research grantsThis past Spring, the SSF awarded seven research grants. The SSF uses a rigorous review process that chooses our awardees by determining which projects will have the greatest potential impact on Sjögren’s patients and that place a high priority on clinical and basic scientific research into the cause, prevention, detection, treatment and cure for Sjögren’s. Unfortunately, each year, the SSF has to turn away numerous research grant applications worthy of support due to a lack of available money for grant funding.

 

 

These are just a highlight of the many successes and advancements from 2018. All of our achievements are thanks to the generosity and support of our donors like you. That is why I ask you today to  consider making a tax-deductible year-end gift . With your help, we can achieve even greater success in 2019. We thank you in advance for your support and generosity as we work together to make a real difference in the fight against Sjögren’s.

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Topics: Sjögren’s

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