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

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

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

Pregnancy and Sjögren's

Posted on Thu, Sep 06, 2018

Pregnancy and Sjögren's 

Nancy Carteron, MD, FACR
Senior Consultant, Rheumatology Immunology
Clinical Faculty, University of California San Francisco

Most women will conceive and have healthy babies. However, there are potential complications. Consulting your obstetrician (OB-GYN), rheumatologist, and possibly a high-risk OB (perinatologist) prior to conceiving or early in pregnancy is suggested.

Pregnancy and Sjögren's  image

Factors contributing to the ability to conceive:

  • Age
  • Primary ovarian failure
  • Endometriosis
  • Environmental factors (i.e. pesticides)

Potential pregnancy complications:

  • Congenital heart block (SSA/SSB
    autoantibodies; possibly RNP antibodies)
  • Neonatal lupus (rash)
  • Fetal loss
  • Intrauterine growth retardation 
  • Premature delivery
  • Recurrent pregnancy loss
  • Preeclampsia (phospholipid autoantibodies)

Know your autoantibody (blood tests) status:

  • SSA (Ro) and SSB (La) – higher levels may carry more risk
  • Phospholipid antibody (APL) – Lupus anticoagulant; IgG and IgM cardiolipin antibody; IgG and IgM anti-beta2 glycoprotein I antibody

Congenital heart block (CHB) – most serious potential complication:
  • First pregnancy 2 % risk
  • If previous child had CHB, risk increases 10-fold for subsequent pregnancy
  • Weekly Doppler fetal echocardiogram surveillance between the 18th and 24th weeks
  • Cardiomyopathy can occur
  • Management strategies, including fetal pacemaker available

Neonatal lupus (rash):

  • Autoantibodies cross the placenta, decline over several weeks, rash resolves
  • If previous child had neonatal lupus, risk increases 5-fold for neonatal rash for subsequent pregnancy

This article was first printed in The Moisture Seekers, SSF's patient newsletter for members. It is also available as an SSF Patient Education Sheet.

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Topics: Pregnancy and Sjögren's, Congenital heart block (CHB), Sjögren’s, Lupus, Skin Rashes

Hair Loss and Sjögren’s

Posted on Mon, Aug 20, 2018

Q. “I am starting to experience hair loss. Can this be connected with my Sjögren’s and what can I do about it?” 

A. Hair loss can be caused by a number of conditions including hormonal or genetic causes, medications, inflammatory conditions of the scalp, autoimmune disorders, or shedding of the hair that can occur after a change in health status. Patients with Sjögren’s can have hair loss, but their underlying Sjögren’s is not always to blame. A thorough history and physical exam by a dermatologist can help to elucidate the underlying cause of the patient’s hair loss and will guide treatment.

As Sjögren’s patients often have a concurrent autoimmune disorder it is important to confirm entities like cutaneous or systemic lupus are not the cause of the hair loss. Control of the underlying autoimmune disease is the priority in this case to improve the hair loss. If cutaneous lupus is present, topical medications, injectable medications, and sometimes-internal medications are needed. Significant illness or major life events, which can affect Sjögren’s patients, can produce a shedding of the hair called telogen effluvium that fortunately is self-resolving. Androgenetic alopecia, a type of hair loss that can be caused by genetic or hormonal factors, and is not related to Sjögren’s, can begin with a widening of the midline part of the hair. Topical minoxidil (Rogaine) 5% foam or solution is usually the first line treatment.

As a number of other conditions can also produce hair loss, I would encourage you to see your dermatologist to diagnose your type of hair loss and formulate a treatment plan.

Natalie Wright, MD, FAAD
Texas

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

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Topics: Sjögren’s, Lupus, Hair Loss, Treatment, coping with sjogren's

Celebrating our Future!

Posted on Wed, Aug 01, 2018

Celebrating the future of the SSF!

SSF This Is Sjogren'sThis past July 23rd, the Sjögren's Syndrome Foundation (SSF) joined with organizations around the world to celebrate the 8th annual World Sjögren's Day and what would have been Dr. Sjögren's 119th birthday. World Sjögren's Day commemorates the birthday of Henrik Sjögren, the ophthalmologist who first discovered the disease in 1933, which has helped all patients find answers to their health questions.

More importantly, celebrating this day allows us to reflect back on the incredible advancements recently made in Sjögren's and look to the future at all the work that still lies ahead.

With millions of patients suffering around the world, Sjögren's is one of the most prevalent autoimmune diseases but it is not a “cookie cutter” disease and affects patients differently. The complexity of Sjögren’s can be seen in the various types of treatments and care needed for patients.  Its complexity is also seen in the progress the SSF still needs to make.

Every day the SSF strives to represent your voice and provide hope to patients and their families through our many initiatives.  Every program and project is evaluated with the patient in mind, which is why we want to hear from you!

Let your voice be heard!

In honor of this past World Sjögren’s Day, we encourage you to share with us your views of the SSF and how you envision the future. Let your voice be heard and comment below with your thoughts on the following SSF questionnaire.


Questionnaire:

Celebrating the future of the SSF and hope for Sjögren’s

(Please share your answers below or email them to tms@sjogrens.org)  

  • What SSF resource(s) are you the most thankful for:
  • What are the three most important focuses of the SSF:
  • In the next five years, how do you envision your future (or that of a loved one) living with the disease:
  • What are your hopes for the future of Sjögren’s for the next generation:

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Topics: World Sjogren's Day, #ThisIsSjögrens, Advocacy, Sjögren’s

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