Conquering Sjogren’s: Follow us on our journey to change the face of Sjogren’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: Treatment, Serum Tears, Clinical Practice Guidelines, Sjögren’s, Xylitol

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. 

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

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

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. 

Click Here to Receive our Newsletter  by Becoming an SSF Member

Topics: Treatment, Sjögren’s, Xylitol

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: Advocacy, #ThisIsSjögrens, Sjögren’s

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.

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

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

Hair Loss and Sjögren’s

Posted on Mon, Aug 20, 2018

SSF logo 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.

Click Here to Receive our Newsletter  by Becoming an SSF Member

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

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:

faces all

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

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

Thank You for Celebrating World Sjögren's Day!

Posted on Tue, Jul 24, 2018

WorldSjogrensDay_logoThis past Monday, July 23rd, 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.

Just because World Sjögren's Day has now passed though, it doesn't mean that the fight ends. While it certainly made an impact, one day alone of increasing awareness and raising much needed funds is not enough. There is still time to make a donation in honor of World Sjögren's Day. You can also donate in honor of a loved one or in honor of the millions of people living with the disease. Additionally, you can still download the Sjögren's fact sheet to help you 
rsz_circle_of_strength_bracelet_chain_cropped
increase awareness. You never know when the opportunity to share information about Sjögren's may arise and we encourage you to do so whenever you have the chance.
 
To change the future of Sjögren's — to achieve the very first therapeutic specifically for Sjögren's, to provide healthcare professionals with guidelines to properly treat patients, to educate patients and give them the support they need to best deal with their disease — we must continue to work together. Your support is invaluable in helping to transform the future of Sjögren's.
 

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

Sincerely,

Steve_Sig
Steven Taylor
Chief Executive Officer
 
Make a Donation Now

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

World Sjögren's Day 2018

Posted on Mon, Jul 09, 2018

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:

WSD 2018

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.

Make a Donation Now

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

Subscribe via E-mail

For reprint permission requests, please contact us at info@sjogrens.org.

Donate Today!

Donate to Research

Follow Me

Latest Posts

Posts by category

Some additional information in one line