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

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.

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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

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

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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

9 Ways to Avoid Care Giver Burnout

Posted on Fri, Jun 29, 2018

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.

Support_

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.

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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. 

Topics: Treatment, Sjögren’s, Care Giver Burnout

Balance and Sjögren’s

Posted on Thu, May 24, 2018

Balance Question_and_Answer

I seem to be having a lot of balance issues. Could this be related to my Sjögren’s? Are there any treatment options?

Poor balance is a risk factor for falling and warrants evaluation. 20% or more of individuals with Sjögren’s have neurological complications, many of which can impact balance. The most common is sensory neuropathy. Even in the absence of burning or tingling, careful examination may reveal loss of sensation in the toes. In an individual with poor balance, a physician will look most closely for evidence of loss of position sense. As the physician moves the patient’s toe up or down, an individual with neuropathy may exhibit no awareness of the direction of the toe. Walking in the dark or blocking ability to see one’s path (by carrying a laundry basket down stairs, for example) can greatly increase falling risk. Once a sensory deficit is discovered, other causes must be sought (such as diabetes or B12 deficiency) before the neuropathy is ascribed to Sjögren’s. Balance training may be helpful and behavior, which increases falling risk, should be eliminated (rushing, multitasking when walking, climbing to unprotected heights).

Other much less common neurological causes of poor balance in Sjögren’s include inflammation of the spinal cord (myelitis), which may result in both sensory loss and muscle spasticity, disorders of the cerebellum and inner ear, and autonomic neuropathy, which may result in inability to maintain blood pressure with standing.

The medication list should also be scrutinized for agents that may impair balance by lowering blood pressure, causing sedation, or damaging peripheral nerve function. If poor balance is present, alcohol use should be curtailed.

A consultation with a neurologist is advised because detailed evaluation of all portions of the nervous system may identify one of the less common causes of poor balance. Nerve conduction studies, MRI imaging of the brain and spinal cord, testing of inner ear function, and, rarely, examination of spinal fluid may be warranted. In instances of progressive sensory loss, immunosuppressive therapy with steroids or other agents, or intravenous immunoglobulin may be advised. Everyone with balance disorders should carefully evaluate the home environment to minimize falling risk. If there is a history of repeated falling, routine use of hip protectors should be considered and osteoporosis, if present, treated to minimize risk of fracture.

Lee Shapiro, MD, Albany, NY

Question_and_Answer
My provider recommended balance therapy. What is involved and how effective is it?

Balance therapy is most typically provided by a Physical Therapist and can encompass a variety of treatment approaches depending on what is causing the loss of balance. A thorough assessment by your Physical Therapist can help to determine which treatments would be most effective. Balance therapy is used to reduce frequent falls, stumbling, vertigo, lightheadedness, difficulty walking steadily on level or uneven surfaces and motion sickness.

Balance is quite complex. There are three major systems in our bodies that constantly send balance information to the brain to be processed. Likewise, the brain is constantly receiving and processing this information and then sending a split second response to the body to tell it how to react and maintain balance. The first system is the Vision System. Vision is used to send the brain information about our surroundings. For example, if you are about to climb a flight of stairs, the vision system sends information to the brain to help prepare to position the body accordingly so that the foot is lifted higher to clear the step and weight is shifted to the opposite leg. Regular eye exams and using your prescribed glasses and contacts is an important part of keeping balance. Common balance issues caused by glasses include glare and distortion when changing between the focal points on bi or tri-focal lenses. Speak with your eye doctor to ensure your glasses are not causing a balance disturbance. Turn on the lights! Walking in dark or dimly lit rooms significantly reduce our ability to use visual feedback for balance. The second system, the somatosensory system, sends the brain information on what the body is feeling through receptors in the skin and joints. If you were to walk on a level sidewalk and then veer off onto a grassy hill, the somatosensory information sensed in your joints and skin would change. As a result the brain can tell the body how to adjust for the change to walking on an uneven and grassy surface. The third system, the Vestibular System, is located in each inner ear. It provides the body information about forces on the head so the body can sense speed, turns and direction of movement. It also coordinates eye, head and body movements so that we can focus on objects as we move. Balance may also be affected by musculoskeletal issues such as pain, weakness and poor flexibility.

The focus of treatment for a balance dysfunction is to challenge the body to perform balance tasks that will re-teach the brain how to process the information it receives. Time, patience and repetition is needed to be successful. Treatment will vary depending on what is causing your balance dysfunction. Some examples of treatment are listed below, however, there are too many treatment strategies to list all of them here. Disorders of the somatosensory system are treated with dynamic balance exercises that challenge balance such as sitting, kneeling or standing on varied surfaces (therapy ball, foam, rocker board, balance beam). Disorders of the visual and vestibular systems are treated with eye and head movement exercises known as vestibulo-ocular exercises. A specific disorder of the Vestibular System called Benign Paroxysmal Positional Vertigo (BPPV) is very successfully treated with a series of body and head positioning exercises. Musculoskeletal disorders are most typically treated with strengthening and stretching exercises along with manual therapy techniques and modalities (electric stimulation, ultra sound, kinesio taping, etc.). Pilates, yoga and tai chi and are three types of popular exercises that improve balance, strength and flexibility.

Does balance therapy work? Balance therapy does work. The degree to which it will improve your balance dysfunction is dependent on several factors. The physiological cause of the dysfunction may preclude total resolution of the symptoms, but an overall improvement in balance can be attained. The factors that you can directly affect for success are following your Physical Therapist’s recommendations, performing exercises as prescribed, being persistent, and following up with your doctor and physical therapist for program advancement. 

Linda Jung, MSPT

This information 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: Ask the Expert, Balance

April is Sjögren's Awareness Month!

Posted on Sun, Apr 01, 2018

30 Faces for Sjögren's Awareness Month!

With an estimated 4 million Americans suffering from Sjögren’s, both men and women of different ages and ethnicities, it is one of the most prevalent but lesser known autoimmune diseases. Sjögren’s is also not a “cookie cutter” disease and affects patients differently. This can lead to a misunderstanding about the seriousness of the disease and be extremely isolating for those living with it. 

Apriil SSF 2017

April is Sjögren's Awareness Month and using our 2018 campaign, “30 Faces for Sjögren’s Awareness Month,” we hope to help others visualize the vast impact of the disease.  Every day in April, we will be using one or more of our social media channels to educate people about Sjögren’s.

We encourage you to use April Awareness Month and our #ThisIsSjögrens social media campaign, as a way to talk about Sjögren’s. Every post is an opportunity to start a conversation about living with Sjögren’s and how it affects you. The more others understand, the more support you can find. And know that we at the Sjögren’s Syndrome Foundation are here for you!

Get Involved!

On behalf of the millions of patients living with Sjögren's, thank you for your support of the SSF and our mission. Together we are transforming the future of Sjögren's for all patients!

Click here to view our daily  April Awareness campaign on Facebook!
 

 this is sjogrens - 2018

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.

Topics: Advocacy, April Awareness Month, #ThisIsSjögrens, Sjögren’s

30 Faces for Sjögren’s Awareness Month 

Posted on Fri, Mar 16, 2018

AprilisSjogrensAwarenessMonth.jpg

30 Faces for Sjögren’s Awareness Month

#ThisIsSjögrens
 

With an estimated 4 million Americans living with Sjögren’s, it is one of the most prevalent but lesser known autoimmune diseases. This can lead to a misunderstanding about the seriousness of the disease and be extremely isolating for those living with it. 

April is Sjögren's Awareness Month and we hope you will join us in educating the public about this complex and debilitating disease. With our 2018 campaign, “30 Faces for Sjögren’s Awareness Month,” we hope to help others visualize the vast impact of the disease. Using the #ThisIsSjögrens hashtag, the SSF will highlight 30 people’s photos, along with a fact about how the disease affects his/her life.

Every day in April, the Foundation will post a different photo of someone who is living with Sjögren's or touched by the disease (you can be a patient, family member, friend, physician, researcher etc.). Along with the photo, we will include one fact from their #ThisIsSjögrens Questionnaire on our social media pages.

The 30 daily posts will each give one small glimpse into the disease, and by the end of April, we hope the collection of posts will show the seriousness and complexity of Sjögren’s.

Let Your Voice Be Heard!

SSF This Is Sjogren's.png

If you would like to submit your story as one of our “30 Faces for April Awareness Campaign” please email us your answers from the questionnaire below, and a picture of yourself, to tms@sjogrens.org with the subject line: “April Awareness Month 2018.”

Thank you for your support. Together we will make Sjögren’s a household name!


#ThisIsSjögrens Questionnaire
(Please email your answers and a picture of yourself to tms@sjogrens.org.) 

Name (The Foundation will only publish first names):

Email: 

Current age: 

Age when diagnosed (or What is your connection to the disease):

City/State:

How would you describe yourself in one word (teacher, graphic designer, stay at home parent): 

What are your top three most difficult symptoms to live with:

What do you wish people knew about your Sjögren’s: 

What’s your best Sjögren’s tip: 

Don’t forget to include a picture of yourself!

 

Topics: Advocacy, April Awareness Month, #ThisIsSjögrens, Sjögren’s

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