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

Learning to Thrive with Sjogren’s

Posted on Wed, Apr 01, 2015

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30 Words for Sjögrens Awareness 

April is Sjögren’s Awareness Month and you are the voice of the Sjögren’s Syndrome Foundation. That is why this April we will be using your words to help raise awareness of the disease. Last week we asked: "If you are living with this disease or know someone who is, what one word represents 'Sjögren’s' to you?"

For the next 30 days, we will be posting one word every day that describes what the disease means to those affected by it, along with a fact or tip that relates to the word.

We encourage you to follow us this April and look for opportunities to share how Sjögren’s has impacted your life. Awareness comes in many different forms, which is why we hope you will share our posts on your social media pages and help make Sjögren’s a household name!

#Day1: Complex. Sjögren’s is not a “cookie cutter” disease & affects patients differently. Many patients experience dry eyes, dry mouth, fatigue and joint pain, but Sjögren’s also causes dysfunction of other organs such as the kidneys, gastrointestinal system, blood vessels, lungs, liver, pancreas, and the central nervous system. And while some people experience mild discomfort, others suffer debilitating symptoms that greatly impair their functioning.

We encourage you learn more about the various symptoms of Sjögren’s by clicking here.  #30Words4Sjögrens #SjögrensAwarenessMonth #Learning2Thrive 

Click here to view our daily campaign on Facebook!

30WordsApril

Topics: Symptoms, April Awareness Month

30 Words for Sjogren’s Awareness

Posted on Thu, Mar 26, 2015

AprilisSjogrensAwarenessMonthApril is Sjögren’s Awareness Month

The Sjögren’s Syndrome Foundation works to educate the public about this complicated and debilitating disease, and how it affects those who live with its daily manifestations. This April, we will use 30 words to help raise awareness of Sjögren’s.

Everyday in April we will post a word of the day that reflects about what is Sjögren’s, to help increase awareness and education of this invisible illness.

You are the voice of Foundation and if you are living with this disease or know someone who is, what is one word that represents “Sjögren’s” to you? Please share your word by commenting below. Thank you for your support and together we will make Sjögren’s a household name!

What is Sjögren’s?
As many as four million Americans are living with Sjögren’s, a chronic autoimmune disease in which people’s white blood cells attack their moisture-producing glands. Although the hallmark symptoms of Sjögren’s are dry eyes, dry mouth, fatigue & joint pain, it is a systemic disease and affects the entire body.

Topics: Sjogren's, Sjögren’s Awareness Month,

What is a Sjogren's Flare?

Posted on Thu, Mar 12, 2015

What is it? How is it treated? Can you avoid it? 

Medical dictionaries define “flare” as a sudden exacerbation of a disease. A flare is different from the day-to- day variation of symptoms that patients with chronic diseases experience and is characterized as a large and rapid increase in a patient’s usual symptoms. I like to define a flare as a sudden and significant increase in the activity of a disease. This definition allows us to use quantitative measures of disease activity to compare levels of disease activity from one point in time (e.g. baseline) to another (e.g. flare). 

2015_SSF_Body_ImageSeveral measures of disease activity have been developed for Sjögren’s. The two most promising are the European League Against Rheumatism Sjögren’s Syndrome Disease Activity Index (ESSDAI) and the European League Against Rheumatism Sjögren’s Syndrome Patient Reported Index (ESSPRI). The first is a tool that measures disease activity from the physician’s perspective in the many organs and systems affected by Sjögren’s.

The second measures disease activity from the patient’s perspective and includes a patient’s global assessment of disease and individual measures of dryness, pain, and fatigue. These surveys have been developed to consistently evaluate disease activity in research settings such as clinical trials. Nevertheless, they could be used in clinical practice as guidelines for evaluating disease activity in the office or clinic. The ESSPRI is a simple tool that could be used in the clinic, much like the use of the Health Assessment Questionnaire (HAQ) in patients with rheumatoid arthritis and other rheumatic diseases.

When patients say they are experiencing a flare, they usually mean that they are experiencing a marked increase in their Sjögren’s symptoms such as dryness of their eyes and/ or mouth, joint and muscle pain, and fatigue. Other symptoms might include swollen glands, skin rashes, or numbness and weakness in extremities. Physicians must make sure that these symptoms and signs are in fact a flare of the Sjögren’s and are not caused by other conditions that are not associated with Sjögren’s. These include infection, anemia, thyroid disease, drug side effects and fibromyalgia syndrome, to mention a few. 

Since there is no specific treatment for Sjögren’s at present, treatment is symptomatic and dependent upon which organ system is involved. There are several things you can do to lessen the likelihood of getting a flare. Keep taking the medications prescribed for you on a regular, daily basis. Eat a healthy diet, exercise regularly and get restorative sleep. Try to minimize physical and emotional stress and develop good coping mechanisms when stress is unavoidable. Hydroxychloroquine has been shown to lower disease activity in systemic lupus erythematosus and may be similarly helpful in Sjögren’s. Your physician also might recommend other medications to improve your symptoms.

-Neil I. Stahl, MD, FACR

This article was first published in The Moisture Seekers, SSF's member newsletter.

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Topics: Diet, Sjogren's, Joint Pain, Fatigue, Treatment, coping with sjogren's, Flare,

We LOVE Our Friends!

Posted on Sat, Feb 14, 2015

Valentines_Day

Thank you for all the love and we want Sjö how much we appreciate you!  Today, the SSF is giving away three complimentary registrations to the 2015 SSF National Patient Conference "Learning to Thrive with Sjögren’s" April 17-18, 2015 at the Grand Hyatt Tampa Bay, Florida.

How to Enter:
To enter, all you have to do is comment "Happy Valentine's Day" below by 11:59pm EST today- February 14, 2015. The Foundation will privately email the three winners on Tuesday, February 17, 2015. Winners will be picked at random and the registrations are only transferable through family members, which means your family can comment below to give you an extra chance at winning! Please email us at info@sjogrens.org with any questions. 

"Learning to Thrive with Sjögren’s"
April 17-18, 2015
The Grand Hyatt Tampa Bay, Florida
2900 Bayport Dr,
Tampa, FL 336078

Presentation Topics Include:

Overview of Sjögren’s
Neurological Complications
Dry Mouth & Sjögren’s
Dry Eye & Sjögren’s
Ear, Nose & Throat Involvement
Gynecological Complications
Major Organ System Involvement
Financial Planning for Patients with Chronic Illness 
Click Here to View the 2015 NPC Brochure
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Top 10 Tips for Burning Mouth from Oral Candidiasis (Thrush)

Posted on Tue, Jan 20, 2015

SSF_Color_LogoOral candidiasis, or thrush, is a common problem in dry mouth patients.

Thrush can cause oral burning and pain. The appearance of thrush in a dry mouth patient is often atypical and appears as red and irritated instead of the typical white cottage-cheesy. The tongue may show grooves, and the corners of the lips appear red and crusty (called angular cheilitis).

Here are 10 tips that can help manage & treat oral thrush:

  1. Practice excellent oral hygiene and change your toothbrush frequently when oral candidiasis is active.

  2. Talk to your dentist or rheumatologist about taking Evoxac® (cevimilene) or Salagen® (pilocarpine) to increase salivary flow.

  3. Don’t use mouthwashes containing alcohol.

  4. Limit sugar and foods that contain yeast, such as wine, beer and bread. And increase your intake of acidophilus through unsweetened yogurts with live lactobacillus acidophilus or capsules.

  5. Avoid caffeine and alcohol, both of which can increase dryness.

  6. Sip water frequently and rinse after eating or drinking if you can’t brush.

  7. If you smoke, STOP!

  8. Clean dental prostheses every day with an anti-fungal preparation and avoid wearing them at night.

  9. Talk to your dentist about prescription therapies available to help with oral candidiasis. Sometimes a combination of treatments is necessary if the problem is severe.

  10. For maintenance once thrush is under control, discuss with your dentist frequent use of a magic mouthwash with diphenhydramine, nystatin and Maalox. A chlorhexidine gluconate rinse can also be helpful (and if you wear dentures, it’s good for cleaning those too).
Click Here to Receive our Newsletter  by Becoming an SSF Member

Check the Sjögren's Syndrome Foundation's Product Directory (free of charge to all SSF members) to see the many products available for dry mouth.

This information was taken from the SSF Patient Education Sheet: Oral Candidiasis (Thrush) authored by Nelson L. Rhodus, DMD, MPH, FICD. Dr. Rhodus is Professor and Director, Division of Oral Medicine, School of Dentistry Adjunct Professor, Department of Otolaryngology, School of Medicine, University of Minnesota, Minneapolis, Minnesota. Click Here to view the full SSF Patient Education Sheet: Oral Candidiasis (Thrush)

Topics: Dry Mouth, Symptoms, Sjogren's, Treatment, Thrush, Burning mouth, Oral Candidiasis (Thrush)

5 Tips for Dry and Brittle Nails

Posted on Thu, Jan 08, 2015

Sjögren's is a systemic disease, affecting the entire body. While the disease's four hallmark symptoms are dry mouth, dry eyes, fatigue and joint pain, symptoms vary from person to person.

Although no clear association between Sjögren’s and nail disorders has been reported, Sjögren's patients frequently complain of this problem. Many different dermatologic conditions including some autoimmune disorders, infections, dryness and certain medications can affect nails.

Brittle nails are characterized by hardness, peeling, crumbling, fissures, excess longitudinal ridges or lack of flexibility of the finger and toe nails. This sometimes causes pain and interferes with normal daily activities.

Here are some tips to help:

  1. Keep the nails short. This prevents the nails from catching on things or acting as a lever and causing further damage.
  2. Protect the nails when performing wet work (like washing dishes) by using rubber gloves and cotton glove liners.
  3. Avoid excess contact with water or chemicals (including nail polish remover) which can cause dryness.
  4. Use moisturizer on your nails multiple times per day and reapply the moisturizer after your hands come in contact with water. You can use the same moisturizer used for your dry skin.
  5. Steer clear of cosmetic products such as artificial nails and nail wraps which can cause damage.

Talk to your Dermatologist:

Nails pic 2  * If your dermatologist approves, try a course of biotin for your have brittle nails.
 
  * If you're diagnosed with a fungal infection of your nails, your dermatologist can discuss a variety of treatment options which are available.

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The SSF thanks Adam I. Rubin, MD for authoring these tips. Dr. Rubin is Director of the Nail Practice & Assistant Professor of Dermatology, Perleman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania.

Topics: Symptoms, Sjogren's, Treatment, Dry Skin, Top 5 Tips, Dry Nails, Makeup Tips

Looking to the Future: Sjögren's & the SSF in 2015

Posted on Mon, Dec 29, 2014

describe the imageDear Friend,

Thank you for your continued support of the Sjögren's Syndrome Foundation (SSF) and our work to better the lives of those who suffer from Sjögren’s. 

We are excited about the progress we continue to make and the recent advancements in Sjögren's research and awareness speaks to the continuous efforts of the SSF, our Board of Directors, Medical and Scientific Advisors, Awareness Ambassadors and the hundreds of volunteers throughout the country. But the greatest impact is being made by YOU! It is your support that has made our achievements over the past year possible. We are truly grateful for your part in our growth and success.

The SSF continues to work hard to impact the lives of those with Sjögren's and in the upcoming year, the SSF plans to: 

  • Encourage pharmaceutical companies to develop new therapeutics for Sjögren’s
  • Assist in getting new Sjögren’s drugs to market by working with the FDA
  • Encourage, support and fund innovative Sjögren’s research
  • Continue our work on the SSF Clinical Patient Guidelines for Sjögren’s 
  • Support the development and use of new diagnostics for Sjögren’s
  • Expand our focus in educating all healthcare providers about the severity of Sjögren’s and its numerous manifestations
  • Further support patients, family and caregivers

Each year, we continue to fight to maintain our hard-won achievements and will make even greater strides forward in the upcoming year. I hope you will renew your support with a year-end gift to the SSF, and give what you can to support our efforts to create a better future for all patients living with this debilitating disease.

Wishing you and your family a wonderful holiday season!

Donate to Research

Sincerely,

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Steven Taylor,
SSF Chief Executive Officer

 

Topics: Sjogren's, Research, 50in5: Breakthrough Goal

Ask the SSF Staff: Treating Primary vs. Secondary Sjögren’s

Posted on Wed, Dec 10, 2014

describe the imagedescribe the image Should I treat my Sjögren’s differently if I have primary vs secondary Sjögren’s? 

Thedescribe the image terms "Primary and "Secondary" were first used in the 1960s and were devised by researchers who wanted to distinguish between those Sjögren’s patients whose disease was not "complicated" by other major rheumatic or autoimmune disorders. When carrying out research, the investigators wanted to make sure they were looking at purely Sjögren’s  patients and not looking at outcomes for patients who had, for example, both Sjögren’s  and rheumatoid arthritis (RA). They thought that could confuse clinical trials looking at how well a specific therapy worked.  As such things usually happen, though, the terms began to carry over to general clinical diagnosis and medical discussions and thought patterns, and that's where everything became complicated and not helpful for patients and not even helpful for the clinicians treating them. It didn't always make a major difference for the research, either.

So, first, what do the terms mean? "Primary" has been defined as a Sjögren’s patient who does not have another major rheumatic and/or autoimmune disease and "Secondary" as a Sjögren’s patient who does. But as you can imagine, it's not always simple or easily apparent. If a patient has another major rheumatic, autoimmune disease such as lupus, RA, scleroderma or the autoimmune disease multiple sclerosis, they would have traditionally been categorized as have "Secondary Sjögren’s." The term "Secondary" has not been applied to the prevalent autoimmune thyroid diseases, however, which are common in Sjögren’s, and so the terms are somewhat tricky.

Also, investigators have confronted a dilemma when a patient has had Sjögren’s for many years and been labeled as "Primary" and then is diagnosed with another major rheumatic and/or autoimmune disease and automatically being re-labeled as "Secondary Sjögren’s."  And to complicate matters more, some clinicians have now started saying their patient has "Primary Sjögren’s” and "Secondary lupus"(for example) while others undiagnosed the patient from having "Primary Sjögren’s” and changed the diagnosis to "Secondary Sjögren’s." How confusing!

Does it really matter? NO - It certainly doesn't matter to the patient or the clinician treating a patient. It doesn't alter treatment, since treatment for these diseases is based largely on the clinical manifestations and symptoms. All patients should be treated on a case-by-case basis. 

Does the label mean your disease is more or less severe? ABSOLUTELY NOT.  If someone has labeled you as having "Secondary Sjögren’s," it does not mean that your Sjögren’s is less severe or secondary in importance to the other condition. It also doesn't mean that symptoms that were labeled as Sjögren’s symptoms previously are now symptoms of the other disease. Autoimmune diseases often overlap, and sometimes it's difficult to tell if a symptom is Sjögren’s or, say, lupus. In fact, Sjögren’s is the most frequent disorder that occurs in conjunction with other autoimmune and rheumatic diseases, so, again, your signs and symptoms must guide the treatment.

Does the label make a difference as to whether patients are monitored for specific complications or not? NO. Again, your management and treatment should depend on your manifestations of autoimmune disease. You might be labeled as having lupus AND Sjögren’s or rheumatoid arthritis AND Sjögren’s, and then your symptoms and diseases should be managed according to your specific case and with complications specific to each in mind.  

Traditionally, it has mattered to an investigator running clinical trials, but even that is now being called into question. First, diagnosis and pigeon-holing these diseases is not always easy or an exact science. Second, investigators didn't mind if patients with RA or lupus who entered clinical trials also had Sjögren’s  and thought it did not muddy the results of trying a new therapeutic. Why? Because, again, like clinical treatment, the trials were primarily targeted toward clinical manifestations - for example, joint pain, which can occur in several rheumatic diseases including Sjögren’s. While a few manifestations might be distinctive of one disease versus another, such as the joint damage that occurs only in rheumatoid arthritis, the results still were based on the manifestation.

The Sjögren’s Syndrome Foundation is trying to move the medical and scientific community away from these terms, because they usually are NOT helpful or necessary. In fact, they are most often used out of habit, and while we recognize that habits can be hard to change and it can take a long time for a majority to start using different terminology, the SSF is on a mission to accomplish this. Simply put, someone either has Sjögren’s or does not have Sjögren’s. Having another identifiable disease doesn't change the fact that the patient has Sjögren’s, and a somewhat arbitrary decision about which additional diseases and conditions might change a patient between "Primary" and "Secondary" no longer makes sense.
 
-Katherine Hammitt, SSF Vice President of Research

This article was first published in The Moisture Seekers, SSF's member newsletter.

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Topics: Diagnosing Sjogren's, Sicca, Sjogren's, Joint Pain, Treatment, Advocacy, Primary v Secondary Sjogrens

Peripheral Neuropathy and Sjogren's

Posted on Thu, Nov 20, 2014

There are many different types of neuropathies in Sjögren’s. These neuropathies can have different causes and may require different diagnostic techniques & therapeutic strategies. Unlike other autoimmune disorders, in which the neuropathies predominantly cause weakness, the neuropathies in Sjögren’s primarily affect sensation and can cause severe pain.

Recognition of unique patterns & causes of neuropathies in Sjögren’s is important in arriving at appropriate therapies.

Top 10 Peripheral Neuropathy & Sjögren’s Facts:

1. Recognize that neuropathic pain is a chronic disease. Just as most causes of neuropathies and neuropathic pain in Sjögren’s do not come on suddenly, reduction of neuropathic pain can take a while.  

2. Initial and predominant neuropathies in Sjögren’s can occur anywhere in the feet, thighs, hands, arms, torso and/or face.

3. Many different symptomatic therapies for neuropathic pain are available. Both physician and patient awareness of potential benefits and side-effects can help tailor an appropriate approach.

4. While the class of tricyclic anti-depressants (TCAs) often constitutes a first-line tier of therapy in other neuropathy syndromes, the TCAs can increase mouth and eye dryness and therefore are not routinely used as front-line therapies in most Sjögren’s patients.

5. Electrophysiologic tests may help in the diagnosis of neuropathies affecting larger nerves which are coated by an insulator called myelin. However, neuropathies affecting smaller-fiber nerves that lack this myelin coating cannot be detected with these tests.

6. Special diagnostic tests, including the technique of superficial, punch skin biopsies (small biopsies of three millimeters and not requiring any stitches), can help in the diagnosis.

7. A relatively rare neuropathy can cause significant weakness in Sjögren’s patients. In contrast to other neuropathies which develop slowly, this neuropathy can present with very abrupt-onset of weakness. This so-called “mononeuritis multiplex” occurs because the blood-flow through vessels which nourishes nerves is suddenly compromised.

8. In general, immunosuppressive medications are almost always warranted to treat “mononeuritis multiplex” neuropathy. In contrast, the role of immunosuppressives is not well-established in other neuropathies, including neuropathies that cause pain but are not associated with weakness.

9. Sjögren’s patients frequently wonder whether pain associated with a neuropathy means they are at an increased risk for more severe motor weakness. While there are exceptions, if weakness is not present at onset, it most likely will not occur.

10. Neuropathic pain can be alleviated and assuaged, although there may initially be a “trial-and-error” process with different and perhaps multiple agents.

The information from this post, provided by rheumatologist and neurologist Dr. Birnbaum, was first published in The Moisture Seekers, SSF's member newsletter.

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Additional Resources:

Topics: Symptoms, Sjogren's, Joint Pain, Treatment, Top 5 Tips, Chronic Pain, Peripheral Neuropathy

Your Support is Making a Difference for Sjogren's!

Posted on Fri, Nov 07, 2014

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Your Support is Making a Difference for Sjögren’s!
SSF Fall Update & Ways to Help 

Dear Friends,

It's been a busy and exciting fall here at the Sjögren's Syndrome Foundation! In addition to the SSF's fall community awareness events, the Foundation staff is now getting ready to attend another scientific meeting, the American College of Rheumatology's (ACR) Annual Meeting, to focus on professional education of Sjögren's. 

At the ACR Annual Meeting, the SSF will be both an exhibitor and presenter, in addition to holding working groups for those who treat Sjögren's. This meeting is the SSF's biggest venue for reaching rheumatologists and providing them the educational materials needed to better identify and treat their Sjögren's patients.

These SSF initiatives and programs that further our mission are only possible because of your support. As you can see below, there are many different ways that you can help this fall. I encourage you to learn about these opportunities and join our fight to conquer Sjögren's!

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On behalf of the SSF, thank you for sharing your story, telling others about the SSF, attending our events, volunteering your time, donating and helping create a future of hope for all Sjögren's patients. 

Sincerely,

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Steven Taylor
Chief Executive Office

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New T-Shirt Design for Team Sjögren’s Turkey Trot Kits! 

Erin faces

Learn what was Turkey Trot Alumni Erin's favorite part of joining Team Sjögren's!

My family and I wore our Team Sjögren’s T-Shirts and as we were racing, multiple people would comment about their friends, family or themselves being affected by this disease. Knowing that the Turkey Trot was bringing people together for a cause I believed in was a wonderful feeling.

 Click Here to read the rest of Erin's Story

 

describe the image Whether you run or not, if you are a patient or know someone with this disease, we are all part of Team Sjögren's. 

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


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It's CFC Time!

We hope you will consider the Sjögren's Syndrome Foundation when choosing where to allocate your Combined Federal Campaign donation this year!

The SSF's CFC Code is: 10603

Tell your co-workers, friends and family how important it is to choose and write in the SSF on their campaign forms too! Every dollar impacts Sjögren's! For more information, please contact the SSF at 1-800-475-6473.

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NPC

Save the Date: 
SSF National Patient Conference, April 17-18, 2015

 The Grand Hyatt Tampa Bay, Florida 
2900 Bayport Dr,
Tampa, FL 336078

The SSF's annual National Patient Conferences are the best way to learn more about Sjögren's. Over the years, these Conferences have helped thousands of patients and their family members gain a better understanding of Sjögren's while giving them an opportunity to meet fellow Sjögren's patients.

If you want to be your own best patient advocate by gaining a thorough understanding of all the key aspects of Sjögren's, then our National Patient Conferences are for you!
More Details Coming Soon

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Upcoming SSF Events 

November 8, 2014- Nashville Area Sjögren's Awareness Walkabout

November 15, 2014-  Streams in the Desert Trivia in Glen Ellyn, IL

November 15, 2014- Capital Region Sjögren's Awareness Walkabout

November 16, 2014- Boston Sip for Sjogren's

January 9-11, 2015-  Team Sjogren's Disney

February 20, 2015-  Phoenix Sjogren's Walkabout & Health Fair

April 17-18, 2015- SSF National Patient Conference

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Topics: Walkabouts, Sjogren's, Advocacy, 50in5: Breakthrough Goal, Turkey Trots

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