The 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:

• Systemic Manifestations in Sjögren’s Patients (PDF – 468 KB)
• Oral Management: Caries Prevention in Sjögren’s Patients (PDF – 71 KB)
• Ocular Management in Sjögren’s Patients (PDF – 566 KB)

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)

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.

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!

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!

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

• Click here to add our anniversary frame to your facebook/ social media picture
  
• Talk about Sjögren’s in your life
• Make a donation to the Foundation
  
• Consider becoming an SSF member and adding your voice to ours, in addition to receiving great member benefits and information!
  

Pregnancy and Sjögren's 

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.

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 18^th and 24^th 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.

Celebrating the future of the SSF!

This past July 23^rd, the Sjögren's Syndrome Foundation (SSF) joined with organizations around the world to celebrate the 8^th annual World Sjögren's Day and what would have been Dr. Sjögren's 119^th 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:

This past Monday, July 23^rd, people from around the world joined together in recognizing World Sjögren's Day. The Sjögren's Syndrome Foundation was truly moved by the number of donations we received, the amount of Sjögren's fact sheets downloaded, and all of the encouraging posts that were shared on social media. It was a very successful day that brought a great deal of awareness for the disease.

The SSF appreciates any efforts you can make throughout
the year to help every day feel like World Sjögren's Day!

Sincerely,

Steven Taylor

Chief Executive Officer

 

On July 23^rd, the SSF invites you to unite with us and participate in World Sjögren's Day!

While World Sjögren's Day commemorates the birthday of Henrik Sjögren, a Swedish ophthalmologist who first identified the disease in 1933, it is more importantly a way to help raise awareness for Sjögren's. It is meant to put a face on the millions of people who live with this disease or suffer from symptoms and have yet to be diagnosed. It gives everyone touched by Sjögren's a vehicle to reach out and educate those close to them - family, friends, co-workers, neighbors, etc. - about the disease. It is the ideal opportunity for you to have your voice heard and to spread awareness about this life-altering disease.

Leading up to World Sjögren's Day and especially on the day itself, we encourage you to use this opportunity to let your voice heard and talk about Sjögren’s with the people in your life. By sharing your story and educating others, you are helping to form the message that Sjögren's is a serious disease that deserves to be recognized. You may also be helping someone who is looking for answers to their problems.

How Can You Get Involved:

• Share Your Story & Raise Funds! Create a personalized fundraising page and share why the cause is so important to you. Then encourage family and friends to support your efforts by making a donation to help further Sjögren's research and education. 
• Update your social media profile picture with the “World Sjögren’s Day” filter
• Host a Facebook Awareness/Fundraising Event
• Donate to the SSF
• Talk about Sjögren’s! 

What is Sjögren’s?

Sjögren’s (“SHOW-grins”) is a systemic autoimmune disease that affects the entire body. Along with symptoms of extensive dryness, other serious complications include profound fatigue, chronic pain, major organ involvement, neuropathies and lymphomas.

Today, as many as four million Americans are living with this disease and nine out of ten patients are women with an average age of onset in the late 40’s. However, Sjögren’s can occur in all age groups, even in children.

The Sjögren’s Syndrome Foundation knows how caring for someone with a chronic illness, like Sjögren’s, can be very rewarding but it can also take a lot of out of you - physically, mentally and emotionally.

We encourage you to share this article with a friend, spouse or family member who helps support you with Sjögren’s and talk about any questions that this article brings up for either of you.

9 ways to prevent and manage burnout

Here are some tips on preventing and dealing with caregiver burnout. Always remember that if you want to take care of someone else in the best way you can, you must take care of yourself first!

Talk with someone. Find a person you can talk with about your feelings, such as a close friend, family member or colleague. You may want to seek professional help—speak with a therapist or social worker who can understand what you’re experiencing.

Write it down. Use a journal as a way to release your thoughts and feelings. Record your fears, impressions, sense of confusion and more.

Join a support group. Share what you’re going through with others in a similar situation. Whether they meet online or in person, these groups offer a great way to meet people who will understand what you’re feeling.

Make time for yourself. Just because you’re a caregiver doesn’t mean you shouldn’t make time for yourself. Enlist a friend, family member or home health aide to relieve you of your duties. Still can’t get out? While your loved one is sleeping, try drinking a cup of tea, soaking in the tub or even sur ng the Internet to relax.

Get educated. Learn as much as you can. The more you know, the more you’ll be prepared for appointments, what’s ahead and the like.

Recruit help. You don’t have to do everything yourself. If people offer help, accept it. If they don’t offer, ask them whether they will lend a hand; they’ll likely be happy to assist you. Ask a family member to shop for groceries and have a neighbor pick up a prescription. The extra hands will enable you to focus on your loved one and yourself.

Have people come to you. Make your life as easy as possible. Have dry cleaning picked up and delivered. Find a hairdresser who makes house calls. Order your groceries online and consider hiring a cleaning service.

Stay healthy. It’s critical that you see to your own needs so that you can be in optimal shape for the sake of the person you’re caring for. Eat a healthful diet with lots of fruits and vegetables, get plenty of sleep, and exercise at least 3 to 5 days a week.

Learn to laugh. Laughter really is one of the best medicines, so rent a silly movie, read a funny book or magazine or call a friend with a good sense of humor to find a way to let loose and chuckle.

This article, written by Stacey Feintuch and reviewed by Health Monitor Advisory Board, was first printed in The Moisture Seekers, SSF's patient newsletter for members, and first published by Health Monitor.