- Identify and learn to recognize stressors in your life.
- Know your limits and pace yourself. Set realistic expectations and plan ahead.
- Listen to your body and take time out as needed to get through your day.
- Don’t be afraid to ask for help.
- Build a support system. To the greatest extent possible, avoid those who are not supportive.
- Educate your friends and family about your disease and what you are going through by becoming an SSF member.
- Join an SSF Support Group and attend an SSF National Patient Conference to meet others with Sjögren’s and learn from Sjögren’s experts.
- Engage with others online by joining Smart Patients, the online SSF support group, and join the SSF Facebook group.
- Practice relaxation techniques such as meditation and consider mindful exercises such as yoga and tai chi.
- Get sufficient rest and sleep every night.
- Eat well! Avoid junk food and too much caffeine and alcohol
- Get moving every day! If you have not been exercising, start slowly and build up. If you have any major health problems such as cardiovascular or lung issues, consult with your doctor before starting an exercise routine.
- If you are employed, request accommodations as needed because of your medical condition. If you can work from home, you can gain more flexibility with your time and work routine.
- Develop a close working relationship with your doctor(s). Report major changes in your psychological well-being such as depression and anxiety.
- Seek help in lowering your stress level. Consider consulting with a mental health professional to talk about your stress, the effect on your quality of life and your disease, and methods for coping.
- Avoid triggers for your stress as often as you can. When you can’t avoid stress, practice techniques that reduce stress and lean on your support system.
- Add laughter to your life! Make time for friends or to make new friends, and engage in stimulating social and mental activities.
We encourage you to comment below with your own tips to help reduce holiday stress with Sjögren's.
The information from this post was first published in The Moisture Seekers, SSF's member newsletter.
Conquering Sjogren’s: Follow us on our journey to change the face of Sjogren’s
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.
Chief Executive Officer
Sjögren’s Syndrome Foundation friends from around the country joined together to raise awareness in their communities by participating in local Turkey Trots wearing a Team Sjögren’s Turkey T-shirt!
We hope everyone had a great race or walk, while also raising awareness and funds for Sjögren’s! Thank you again to everyone who joined Team Sjögren’s Goes Turkey and stepping up for Sjögren’s!
Remember to send us pictures of you at your Turkey Trot by emailing them to email@example.com.
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)
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.
Saliva 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.
"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.
Ingesting 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
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!
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.
Factors contributing to the ability to conceive:
- Primary ovarian failure
- 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
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
This article was first printed in The Moisture Seekers, SSF's patient newsletter for members.
Celebrating the future of the SSF!
This 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.
Celebrating the future of the SSF and hope for Sjögren’s
(Please share your answers below or email them to firstname.lastname@example.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: