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

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!

Click Here to Receive our Newsletter  by Becoming an SSF Member

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

 

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

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

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.

Make a Donation Now

Topics: Sjögren’s

How to Reduce Holiday Stress with Sjögren’s

Posted on Fri, Dec 28, 2018

Stress and Sjögren's
Stress has been linked as one potential factor in contributing to the development of disease, including Sjögren’s and, once someone has Sjögren’s stress can exacerbate symptoms.
 
Especially during the busy holiday season, it’s important to make sure you listen to your body and do not neglect your health. Here's a collection of SSF tips to becoming more mindful and reducing and coping with stress follows.
  • Identify and learn to recognize stressors in your life.
  • Know your limits and pace yourself. Set realistic expectations and plan ahead.
  • Listen to your body and take time out as needed to get through your day.
  • Don’t be afraid to ask for help.
  • Build a support system. To the greatest extent possible, avoid those who are not supportive.
  • Educate your friends and family about your disease and what you are going through by becoming an SSF member.
  • Join an SSF Support Group and attend an SSF National Patient Conference to meet others with Sjögren’s and learn from Sjögren’s experts.
  • Engage with others online by joining Smart Patients, the online SSF support group, and join the SSF Facebook group.
  • Practice relaxation techniques such as meditation and consider mindful exercises such as yoga and tai chi.
  • Get sufficient rest and sleep every night.
  • Eat well! Avoid junk food and too much caffeine and alcohol
  • Get moving every day! If you have not been exercising, start slowly and build up. If you have any major health problems such as cardiovascular or lung issues, consult with your doctor before starting an exercise routine.
  • If you are employed, request accommodations as needed because of your medical condition. If you can work from home, you can gain more flexibility with your time and work routine.
  • Develop a close working relationship with your doctor(s). Report major changes in your psychological well-being such as depression and anxiety.
  • Seek help in lowering your stress level. Consider consulting with a mental health professional to talk about your stress, the effect on your quality of life and your disease, and methods for coping.
  • Avoid triggers for your stress as often as you can. When you can’t avoid stress, practice techniques that reduce stress and lean on your support system.
  • Add laughter to your life! Make time for friends or to make new friends, and engage in stimulating social and mental activities.

    We encourage you to comment below with your own tips to help reduce holiday stress with Sjögren's. 

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

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

Help Make Our Vision for Sjögren's a Reality!

Posted on Mon, Dec 17, 2018

For the past 35 years, the Sjögren's Syndrome Foundation (SSF) has been incredibly proud to support Sjögren's patients and their families. We are also extremely honored to serve as the voice for all Sjögren's patients as we combat this complex disease.
 
Elaine NYCThe mantra of our founder, Elaine Harris, “founded by a patient, for patients” remains the center of what we do. Our initiatives, programs and overall efforts are first and foremost started, advanced and expanded with the Sjögren's patient in mind. And the SSF staff, Board of Directors and volunteers all work to ensure the patient voice is never lost in our efforts.

While we have made great strides, we also recognize that as our disease evolves and the SSF expands our reach and scope, we must continue to create a community where patients, healthcare professionals and researchers come together to conquer the complexities of Sjögren’s. This is our vision for the future, but we can't do it alone.

That is why as the year comes to an end, I ask you to help make this vision a reality by making a year-end donation to the SSF.
 
I want to thank you for investing in us, for volunteering with us, and for sharing our passion and vision for strengthening OUR Sjögren’s community. We look forward to continuing to serve as the voice for all Sjögren’s patients and are excited for what the future holds. 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. 
 
With many thanks and best wishes for a happy & healthy holiday season,

steve_taylor
Steven Taylor
Chief Executive Officer

P.S. We also encourage you to share this with family and friends so they too have the opportunity to support the SSF
Support the SSF with a Donation

Topics: Sjögren’s

Thank You to Everyone Who Joined Team Sjögren’s Goes Turkey!

Posted on Fri, Nov 30, 2018

Team_Sjogrens_Turkey_Logo-1Sjögren’s Syndrome Foundation friends from around the country joined together to raise awareness in their communities by participating in local Turkey Trots wearing a Team Sjögren’s Turkey T-shirt!

We hope everyone had a great race or walk, while also raising awareness and funds for Sjögren’s! Thank you again to everyone who joined Team Sjögren’s Goes Turkey and stepping up for Sjögren’s! 

Remember to send us pictures of you at your Turkey Trot by emailing them to info@sjogrens.org.

Turkey Trot copy  

Click here to view  SSF T-Shirts & Merchandise 

Topics: Turkey Trots, Team Sjogren's

Sjögren’s Clinical Practice Guidelines Phase I

Posted on Mon, Nov 05, 2018

CPGs phase 1The Sjögren's Syndrome Foundation (SSF) brought together clinical leaders and Sjögren’s experts in all areas of care to produce and publish the very first Clinical Practice Guidelines in Sjögren’s to ensure quality and consistency of care for the assessment and management of patients.

These guidelines will help doctors and dentists in various disciplines to provide appropriate care to Sjögren’s patients and will ensure that patients receive the best treatment possible.

There are currently three (3) different Guidelines that have been completed and published and they are:

Currently, the SSF is working on Phase 2.The second phase of this initiative will significantly increase the guidance offered on the management and treatment of Sjögren’s. The following topics will be addressed in Phase 2:

  • Systemic Manifestations in Sjögren’s
    (Pumonary; Peripheral nervous system (PNS); Central nervous system (CNS); Lymphoma and other blood cancers; Vasculitis)
  • Oral Manifestations in Sjögren’s
    (Muscosal management and symptom relief; Use of secretagogues; Caries management and restoration)
  • Ocular Manifestations in Sjögren’s
    (Update and expand on the ocular guidelines developed in Phase 1 and TFOS DEWS II Report)
  • Cross-cutting Topics
    (Parotid and lacrimal gland swelling)
Click here to learn more about Sjögren’s Clinical  Guidelines

Topics: Sjögren’s, Clinical Practice Guidelines, Treatment, Serum Tears

Dental Care with Sjögren's: What type of toothbrush to use & how often should you brush

Posted on Wed, Oct 31, 2018

In honor of Halloween and trick-or-treating sweets, the Sjögren's Syndrome Foundation would like to remind everyone to pay extra attention to their oral health with today's blog post. 

Xerostomia or dry mouth is among the most common symptoms experienced by Sjögren’s patients. Dental care is extremely important to those who experience dry mouth because a decrease in saliva ow has many negative effects on overall oral health.

dental health SSFSaliva not only serves a natural lubricant that keeps our mouth moist and comfortable, but it also plays an important role in the health of our teeth and gums. Minerals in saliva help to neutralize acid and assist in the enamel repair of our teeth. Saliva also acts as a natural rinsing agent reducing the amount of bacterial plaque buildup on our teeth and gums. Plaque is a film of bacteria and sugars that forms on our teeth and leads to tooth decay (cavities) and gum disease if not removed properly.

Our toothbrush serves as the most important tool to remove bacterial plaque from the tooth surface. Brushing at least twice a day for 2 minutes will help to remove sticky plaque from the teeth, reducing the risk of developing cavities. Sonic toothbrushes are an excellent option for patients with Sjögren’s. These brushes are shown to remove more plaque than manual toothbrushes because of the high intensity vibrations that they generate. Sonic toothbrushes create an average of 30,000 brush-strokes per minute as compared to an average of 300 with a manual toothbrush. The vibration created by the sonic toothbrush also drives fluid between the teeth and along the gum line. This can aid in stimulating the gum tissue and which can sometimes become sensitive with a chronically dry mouth. Using a soft or extra soft bristled toothbrush is also recommended since lack of saliva can cause the mouth to be more susceptible to cuts and sores.

In addition to brushing, it is important to floss daily to help remove the plaque in between the teeth and under the gum line. If not cleaned effectively, plaque that is allowed to accumulate around the gums can lead to gum disease.

A dry mouth also makes it easier for bacteria to stick to the tongue. This can lead to bad breath and impaired taste. It is recommended to brush your tongue daily with your toothbrush to loosen bacteria from the surface. You can also use a tongue scraper to gently remove bacteria from the tongue.

Because saliva plays such a significant role in the health of our teeth and gums, patients who experience dry mouth are at an increased risk for tooth decay and gum disease. Excellent oral hygiene and regular visits to an understanding and Sjögren’s-knowledgeable dentist and dental hygienists can help reduce the negative effects of dry mouth and keep the patient happy and healthy.

by Erin LaChapelle, RDH, BSDH

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

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Topics: Dry Mouth, Tooth Decay, Sjögren’s, Caries Prevention

Xylitol Sweetener Toxicity in Pets

Posted on Tue, Oct 16, 2018

Question_and_Answer"I use a number of products that contain xylitol (chewing gum, candies, baked goods and toothpaste) and recently heard that this sweetener can be harmful to pets. Can you explain why?" 

Xylitol toxicity in pets is becoming more common as this sweetener is used more often in human foods. It is particularly toxic to dogs due to the way xylitol is absorbed and broken down. At this point, it does not seem to be as toxic to other pets including cats and exotics.

In people, xylitol is absorbed slowly after ingestion. Unfortunately, in dogs it is absorbed rapidly and once in the bloodstream it acts as a strong promoter of insulin release. Insulin lowers blood glucose levels. When too much insulin is released, the blood glucose drops significantly, causing a dangerous hypoglycemia. Signs such as extreme lethargy or seizures can occur. Vomiting is often the rst sign seen.

Xylitol toxicity in dogs can also cause liver failure. This may take up to 48 hours to develop. Bleeding, bruising, and even death can occur in these cases.

SSF DogIngesting even a small amount of xylitol can cause signs of toxicity. In a 20-pound dog as few as one or two pieces of gum may cause hypoglycemia and 5 to 10 pieces may cause liver failure. For the granulated form of xylitol used for baking, as little as 1⁄4 teaspoon may cause hypoglycemia or just over one teaspoon may cause liver failure in that 20-pound pooch.

If there is any chance your dog ingested a product containing xylitol, you should call a veterinarian immediately. Typical treatment may include inducing vomiting, running blood work, and giving intravenous fluids containing dextrose (sugar). Various blood work parameters should be monitored for up to three days.

Since xylitol is so toxic to dogs, handling of xylitol-containing foods is very important. Those dogs that experience uncomplicated hypoglycemia have a good prognosis if intervention is initiated promptly. Unfortunately, those dogs that develop liver failure have a poor prognosis.

-Patricia Mackey, DVM

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

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Topics: Xylitol, Sjögren’s, Treatment

Celebrating 35 Years!

Posted on Wed, Sep 19, 2018

Elaine September marks the 35th Anniversary of the Sjögren’s Syndrome Foundation (SSF) that was founded by Elaine K. Harris, a frustrated patient determined to learn more about her disease. During the SSF’s first year, Elaine held support group meetings in her home and wrote The Moisture Seekers, the Foundation’s patient newsletter, on her typewriter.  She then slowly grew that support group into the SSF.

Today, in her 90s, Elaine still remains an important force in the eyes of the SSF.  Her mantra of "founded by a patient, for patients” remains the center of what we do. While the Foundation has always been a patient focused organization, it has grown from a “Mom & Pop” operation that was started 35 years ago into an internationally recognized organization shaping the industry in terms of research, education, patient care, advocacy and new therapies.

Elaine NYC

The SSF staff and our hundreds of volunteers, work hard to ensure that the patient voice is never lost in our discussions nor plans. And our accomplishments speak volumes for how we are changing Sjögren’s for our patients. We are working diligently on the development of new therapeutics to treat Sjögren’s and have published the first-ever Clinical Practice Guidelines in Sjögren’s! These guidelines are starting to provide a roadmap for physicians and dentists to use when treating their patients.

And probably one of the biggest accomplishments in the past 5 years, is the SSF’s achievement of our 5-Year Breakthrough Goal – to reduce the time to diagnose Sjögren’s by 50%!  When we set that goal in 2012, it took nearly 6 years to receive a proper diagnosis, and we are proud to say that, in 2017, we were able to announce that we exceeded our goal and have reduced that time to 2.8 years!

Elaine Harris Sjögren’s is finally receiving the recognition and appreciation it deserves. Although not to the level we need it to be, we are seeing more and more physicians step up to learn about Sjögren’s, while more and more families of patients are starting to get involved with the SSF. 

We are also seeing more interest from pharmaceutical companies than ever before, all interested in helping us to find a new treatment to help our patients!  A treatment that will help fight the entire disease, not just one symptom.

Happy Anniversary SSF and here is to another 35 years!

Steve and Elaine

 

 

Support the vision that Elaine K. Harris  had 35 years ago and all Sjögren’s patients by  becoming an SSF member!

Help us celebrate 35 years of helping all Sjögren’s patients!

Topics: #ThisIsSjögrens, Sjögren’s, Advocacy

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