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

RESEARCH UPDATE: New Breakthrough from SSF Grantees

Posted on Thu, Sep 07, 2017

 "Findings yield new clues to puzzling autoimmune disease"

OMRF.jpgOklahoma Medical Research Foundation (OMRF) scientist and former SSF research grant recipient, Kathy Sivils, Ph.D., and her colleagues have identified a strong association between a variant in a gene called OAS1 and susceptibility to Sjögren’s. This variant may provide valuable insight into the genetic basis of Sjögren’s, as well as other autoimmune conditions with similar triggers.

This research was completed by the Sjögren’s Genetics Network (SGENE) that consists of an international coalition of researchers led by scientists at OMRF, including two former SSF Research Grantees: Dr. Kathy Sivils and Dr. Christopher Lessard.

“There was very little evidence for a connection to autoimmune disease prior to our study. Firmly establishing this new association with Sjögren’s then led us to look at the gene’s function in more detail,” said OMRF scientist, co-leader of the project and former SSF research grant recipient, Christopher Lessard, Ph.D.

“If we can get out ahead of the disease, it might help lessen the severe damage that can occur in salivary glands and other organs,” Dr. Sivils said. “Early diagnosis and proper treatment are crucial, and discoveries like this one may give researchers and healthcare professionals more to work with as they look for clues to this perplexing disease.”

Although this is only one step in unlocking the mystery of Sjögren’s, this breakthrough gives hope for future researchers to investigate causes, progressions, and treatments at the disease’s genetic level.

“On behalf of Sjögren’s patients, the Sjögren’s Syndrome Foundation (SSF) applauds OMRF for its commitment to finding the many unanswered questions about the disease,” said SSF CEO Steven Taylor. “Drs. Sivils and Lessard, along with their OMRF colleagues, continue to leave their mark in advancing Sjögren’s research, and patients worldwide will benefit from their hard work.”

It’s because of your generous support that the SSF is able to award grants to talented investigators, like Dr. Sivils and Dr. Lessard, who bring novel approaches to Sjögren’s research. The SSF is currently focused on many research initiatives including: Research Grants, Clinical Practice GuidelinesClinical Trials Consortium and our 5-Year Breakthrough GoalWe hope you will consider donating to the SSF Research Program and help us transform the future of Sjögren’s for all patients and their families. 

Click here to read the full press release from OMRF

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Topics: Sjogren's, Advocacy, Research

Headaches and Sjögren’s

Posted on Thu, Aug 31, 2017

Headaches and Sjogren's.png

Sjögren’s is a systemic autoimmune disease often characterized by dryness of the eyes and mouth and accompanied by chronic fatigue and musculoskeletal pain. Over half of Sjögren’s patients experience systemic symptoms, some of which can involve the nervous system. One of the most common symptoms involving the nervous system is headache. Headaches are a common complaint in healthy people who do not have an autoimmune disease. Some of the most common types of headaches include tension type headaches, migraines (with and without aura), and cluster headaches. Headaches are common in Sjögren’s, estimated to occur in roughly 50 to 75% of patients.

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Many Sjögren’s patients may wonder whether or not their underlying autoimmune disease is causing the headaches. Although the answer to this question is largely unknown, some research comparing Sjögren’s patients with healthy controls show that tension-type headaches and migraine headaches, the most common headache subtypes found in Sjögren’s, are more common in those with Sjögren’s than in the general population. Other data demonstrate headaches are more severe in those with Sjögren’s than in those of the general population with depression as a significant influence on headache severity.

Sjögren’s patients may also develop a rare and particularly severe type of headache caused by inflammation of the outer lining of the brain (the leptomeninges) called aseptic meningitis. Although meningitis in general is typically caused by infectious agents like viruses and bacteria, in aseptic meningitis, the inflammation is not caused by infection but rather by other causes such as a reaction to a medication or autoimmune activity. In addition to headaches, aseptic meningitis may also be associated with fever, neck stiffness, and other neurologic symptoms such as double vision. 

In general, treatment for routine headaches is the same in those with Sjögren’s as it is for anyone else including medications such as acetaminophen or ibuprofen. Treatment for aseptic meningitis may also involve glucocorticoids such as prednisone. For those Sjögren’s who suffer from headaches, it is important to discuss this symptom with the primary care practitioner and rheumatologist to see if further evaluation is warranted.

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: Depression, Symptoms, Sjogren's, Treatment, coping with sjogren's, Headaches

Ask the Expert: Frequent Bladder Infections and Sjögren’s

Posted on Thu, Aug 17, 2017

Question_and_Answer.jpg“I’ve recently started experiencing frequent bladder infections, could this be associated with my Sjögren’s?"

Sjögren’s is an autoimmune disease that causes dryness in the body, including the vaginal area. Vaginal dryness may result in discomfort during sexual intercourse and an increase in the risk of bacterial and fungal vaginal infections. Painful urination, a common symptom of UTIs, also can occur with vaginal infections. 

If you are find that you are experiencing symptoms similar to those of a urinary tract infection — urinary frequency, urgency and pain — make sure that you ask your doctor for a full urine culture.  These urinary symptoms in the absence of bacteria, could point to Interstitial Cystitis (IC) and should be further investigated with the help of an urologist. 

Research about the overlap of IC and Sjögren’s is limited, however, case reports are beginning to pop up in the clinical literature. And, the Social Security Administration (SSA) lists Sjögren’s in the Social Security Disability Insurance guidelines and highlights IC as one of many overlapping conditions experienced by people with Sjögren’s.

Although a universal cause for IC (such as a biomarker) has not been found, postulated causes include reoccurring bladder infections, pelvic dysfunction, and it being an autoimmune condition.

by Jennifer Zuzelski,  Program Manager/Information Specialist, Interstitial Cystitis Association

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

Comment below and let us know what questions you would like answered in upcoming issues of The Moisture Seekers.

Topics: Symptoms, Treatment, Vaginal Dryness, Disability, Ask the Expert, Bladder Infections

World Sjögren's Day 2017

Posted on Sat, Jul 01, 2017

World Sjögren's Day commemorates the birthday of Henrik Sjögren, the Swedish ophthalmologist who first identified the disease in 1933 and has helped all patients find answers to their health questions. This year, the SSF will join with other organizations around the world to celebrate recent advancements made in Sjögren's this past year and raise awareness of the disease in honor of Dr. Sjögren.

World Sjögren's Day helps 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. 

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:

This is Sjo Collage 2.jpg

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.

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UPDATE:

World Sjögren’s Day Raises over $8,000!

Thank you to everyone who shared their story and donated in honor of World Sjögren’s Day, which was created to commemorate the birthday of Dr. Henrik Sjögren! Together, we not only increased awareness of this debilitating disease but also raised over $8,000 for Sjögren’s research and SSF patient programs!

Remember, even though the day has passed you can still donate in honor of Dr. Sjögren and all patients.  Click here to learn more.

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

What You Need to Know About Sjögren’s Clinical Trials

Posted on Tue, Jun 13, 2017

clinical trial.jpgClinical trials are a crucial element in medicine and health care to help develop drugs that will treat or possibly cure certain diseases. Researchers use clinical trials to test if a drug works, how well it works, how safe it is and how it compares to any currently available treatments.

Before a drug can be tested on human patients, it is tested for years in labs. Clinical trials are among the final steps of the drug development process. When drugs are brought to clinical trials, pharmaceutical companies must find enough patients to participate in the research in order to get solid results. The rarer the condition, the more difficult it can be to find the number of patients needed for a trial.

Considerations for Participating in a Clinical Trial

If you have been diagnosed with Sjögren’s and are thinking about participating in a clinical trial, there are several factors you should consider. You can learn about trials taking place in your area on the Sjögren’s Syndrome Foundation’s website by clicking here. When researching details of potential trials that might work for you, find out the risks and benefits of each trial, ask if there are any costs that you may be responsible for associated with participation, and most importantly, talk to your doctor about whether or not the trial is right for you.

One specific consideration for participating in a Sjögren’s study is your diagnosis. In some cases, the diagnostic criteria in the study protocol may be different than the criteria your doctor used in your diagnosis.

Clinical trials can help patients gain access to new drugs and expert medical care, while contributing to important medical research benefiting the larger community. However, patients should not enter a clinical trial without considering the risks and costs to themselves as well – the medication might not work, or might have unpleasant side effects; the time and travel to the study site, time for study visits and absences from work might be costly; and once the trial is complete, the treatment may still need to undergo months of approvals before you can have regular access to it. Additionally, as a patient in a clinical trial, you may receive a placebo drug or therapy instead of the new treatment being studied. Even if you are a patient receiving a placebo, you will still receive basic standard of care and medical oversight for your condition.

How do Clinical Trials Work?

Clinical trials vary greatly depending on the type of study and the treatment being tested. Each trial is usually funded, or sponsored, by a pharmaceutical company, academic research center, or federal agencies such as the National Institutes of Health (NIH). Studies take place across the U.S. and even globally, at hospitals, physician offices, clinics and more – one study might have researchers conducting the trial in many different locations.

Prior to enrolling, you should know how long the study is expected to last, where you will need to go and what you will need to do in order to participate, how your participation will be compensated for – or if you will be compensated for your participation and more. These questions can be answered during discussions with the doctor or staff running the study. If you are still interested in participating, the study staff will usually schedule a screening visit. The details of screening appointments varies from study to study, but all screening appointments are used to determine your eligibility for the trial. Depending on the therapy being studied, screening appointments might look to learn your medical history; run blood, urine or tissue samples; and learn what medications you are currently taking.

Following the screening, the team running the study will contact you to let you know if you qualify for the trial or not. If you do qualify, you will be scheduled for your first study visit, which will help establish the baseline of your participation in the study. Again, the specifics will vary in each trial, but the doctor might run tests or draw labs, as well as give you the drug being studied and instructions for dosing and any reporting you may need to do. This first visit will also give you a chance to schedule future visits.

Throughout the duration of the study, you will need to attend appointments at various intervals. Some studies require regular visits or even hospital stays, while others can be done less frequently. As a study progresses, you may need to be seen less frequently. At each visit, the doctor may re-run tests or labs to compare against the baseline. You also may be given more medication at each visit.

When the study comes to an end, you will need to turn in any unused medication and reporting documents. The doctor will perform tests, labs or procedures similar to what was done during your screening or baseline appointments to see if the drug has made an impact on your health. The doctor may be able to tell you what treatment you received during the study once the study is complete. Once the clinical trial is completed, you will need to revert to your previous physician, if different, and treatment schedule.

Deciding to join a clinical trial can be a difficult decision, but taking part can help researchers learn more about potential treatments for your condition. If you carefully consider the risks and rewards, and arm yourself with information before committing to a study, participating can be a very rewarding experience.

by Kristen Snipes, Project Director at Rho, a Clinical Research Organization

This information was first printed in The Moisture Seeker, SSF's patient  
newsletter for members. 

Click here to learn more about  Sjögren’s clinical trials

Topics: Treatment, Advocacy, Clinical Trials

Ask the Expert: Sjögren’s and Fibromyalgia

Posted on Wed, May 31, 2017

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"I have been diagnosed with Sjögren’s and fibromyalgia. How do I know what symptoms are because of my Sjögren’s and which are from the fibromyalgia? 

Should I change how I treat a symptom based on which disease caused it?"

There are many symptoms of Sjögren’s and fibromyalgia that overlap, and many people suffer from both conditions simultaneously, so this is a very good question. For example, both disorders can cause symptoms of dry eyes. If the dry eyes is due to Sjögren’s the person’s eyes will actually be dry, and artificial tears or medications to increase tearing can help. That same symptom seen in fibromyalgia is not due to the eye really being dry, but instead the nerves throughout the body being more sensitive, and feeling dryness when there is none.

Pain is another symptom that both disorders can cause. If it is from Sjögren’s the pain will typically be in the joints, whereas if it is due to fibromyalgia it can be anywhere, and will especially involve the trunk, muscles, etc.

Fatigue is a characteristic of both disorders as well, but it is difficult to differentiate the fatigue of Sjögren’s from that of fibromyalgia, except by “the company it keeps.” By this I mean that if you have overall symptoms of fibromyalgia (pain in many areas, sleep problems, sensitivity to brightness of lights, noises, odors, etc), then the fatigue you are experiencing is likely more due to the fibromyalgia, whereas if there are no other symptoms of fibromyalgia and you primarily are experiencing symptoms of Sjögren’s, then the fatigue is more likely due to the Sjögren’s. 

by Daniel Clauw, MD, Michigan

 

This information was first printed in The Moisture Seekers, SSF's patient  
newsletter for members.

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Topics: Dry Eyes, Symptoms, Sjogren's, Joint Pain, Fatigue, Chronic Pain, Ask the Expert, Fibromyalgia

National Patient Survey Reveals Significant Physical and Emotional Burdens of Sjögren’s

Posted on Fri, Apr 21, 2017

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April is Sjögren’s Awareness Month and to better portray the entire patient experience, the Sjögren’s Syndrome Foundation (SSF) is using facts and figures from our recent “Living
with Sjögren’s” patient survey in our This Is Sjögren’s 2017 April Awareness Campaign. This survey, which was conducted by Harris Poll on behalf of the SSF, gave the Foundation amazing data about how patients’ lives are affected by Sjögren’s, what symptoms and complications patients live with and how the disease affects their emotional and financial well-being.

For the overwhelming majority of Sjögren’s patients, coping with the disease every day, is a limits ones ability to function at home and in the workplace, according to our survey. As patients know, Sjögren’s is a systemic autoimmune disease that affects the entire body and affects approximately one-percent of the U.S. population.

Sjögren’s is often referred to as an invisible disease, one that, while patients may experience extreme discomfort, people don’t physically see, which leads to a misunderstanding about the seriousness of the disease. If you break a bone and wear a cast others can see your injury and understand your limitations. But with Sjögren’s, your symptoms are not clearly visible so not only do you have to put up with challenging, often painful, and sometimes debilitating conditions every day, but you may face disbelief from family, friends, co-workers, and even doctors, who don’t understand what’s wrong with you. The “Living with Sjögren’s: Summary of Major Findings” brings to the forefront the significant quality of life challenges faced by Sjögren’s patients.

Below you will find the “Living with Sjögren’s: Summary of Major Findings” (or view  full Report here). I encourage you to share this with your family and friends to help start a conversation about living with Sjögren’s and how it affects you. The SSF knows, that as we help others understand the disease, the more support patients will find. And please know that the Sjögren’s Syndrome Foundation is always fighting for you and ensuring that the patient voice is heard! We are committed to accelerating the development of better diagnostic, management and therapeutics that will have the greatest potential impact on improving the quality of life for Sjögren’s patients.

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April is Sjögren’s Awareness Month!

Posted on Sat, Apr 01, 2017

SSF This Is Sjogren's.pngApril is Sjögren’s Awareness Month! To portray the entire patient experience, in our This Is Sjögren’s Awareness Campaign, the Sjögren’s Syndrome Foundation (SSF) is drawing facts and figures from our recent “Living with Sjögren’s survey findings. This survey, which was conducted by Harris Poll on behalf of the SSF, gave the Foundation amazing data about how patients’ lives are affected by Sjögren’s, what symptoms and complications patients live with and how the disease affects their emotional and financial well-being. 

The independent nationwide survey, designed by Harris Poll along with the SSF and a volunteer committee of patients and healthcare providers, was mailed to Foundation members in the spring of 2016. Nearly 3,000 adults shared their experiences with the disease and its physical, financial and emotional effects on their lives.

With the support of our members, this survey was developed to help the SSF:

  • Educate regulatory agencies and pharmaceutical companies about a need for a therapeutic drug for Sjögren’s
  • Support the need for additional SSF Clinical Practice Guidelines (CPGs) for how to treat and manage Sjögren’s
  • Provide researchers with information about the variety and severity of experiences patients have with Sjögren’s
  • Create greater awareness of this disease among consumers and healthcare professionals

Every day the SSF is sharing a fact from these survey findings or other information about the disease on our social media accounts to show: This is Sjögren’s (#ThisIsSjögrens)! While the daily post give a small glimpse into Sjögren’s, by the end of April, we hope these 30 posts will show the complexity and seriousness of the disease. SSF_17114.03-4-2.png

How Can You Get Involved:

We encourage you to use April Awareness month and our #ThisIsSjögrens social media campaign, as a way to talk about Sjögren’s with your family and friends. 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! We are committed to accelerating the development of better diagnostic, management and therapeutics that will have the greatest potential impact on improving the quality of life for Sjögren’s patients. Together, we will transform the future of Sjögren’s!

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

 

Topics: coping with sjogren's, Advocacy, Men with Sjogren's,, Children with Sjogren's,, April Awareness Month, #ThisIsSjögrens

Sjögren's Awareness Month is Almost Here!

Posted on Mon, Mar 20, 2017


ATT00002.pngApril is Sjögren's Awareness Month and we hope you will join us in educating the public about this complex disease and how it affects those who are living with it.

Sjögren's is often described as an invisible illness because many of the disease’s debilitating symptoms cannot be physically seen. This can lead to a misunderstanding about the seriousness of the disease and be extremely isolating for those living with Sjögren's. 

This April, the SSF is going to build upon our This Is Sjögren’s campaign from last year! Our goal is to help others visualize the disease from a patient’s perspective, and close the gap between the reality of Sjögren’s and the perception that many non-patients have with Sjögren’s! 

To better portray the entire patient experience, in our #ThisIsSjögrens 2017 April Awareness campaign, the SSF will be drawing facts and figures from our recent national patient survey. This survey, which was conducted last year, has given the SSF amazing data about how our patients lives are affected by Sjögren’s, what symptoms and complications patients live with and how the disease affects their emotional and financial well-being!  

Each day, throughout April, the Foundation will post a different #ThisIsSjögrens factoid or patient phrase on social media – so stay tuned! And while the daily post will give a small glimpse into living with Sjögren’s, by the end of April, we hope these 30 posts will show the complexity and seriousness of the disease.

Let Your Voice Be Heard!

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As the voice of the SSF, we want to hear form you! Please comment below and share with us one phrase that represents what it’s like to live with Sjögren’s. Thank you for your support; together we will transform the future of Sjögren’s.                                             

Example: Sjögren’s means choosing a medication that will help with my fatigue and joint pain but knowing it will make my eyes drier and more painful. #ThisIsSjögrens!

Topics: coping with sjogren's, Advocacy, April Awareness Month

2017 National Patient Conference Keynote Speaker Announced!

Posted on Tue, Feb 28, 2017

JanetChurch.jpgBack by popular demand, the SSF is thrilled to welcome back Janet E. Church as the 2017 SSF National Patient Conference Keynote Speaker!

The 2017 SSF National Patient Conference, “This is Sjögren’s: An Educational Journey,” will be held March 31 – April 1, at the Crowne Plaza Philadelphia/Cherry Hill.

Janet is an entrepreneur, tech-industry veteran, Sjögren’s patientand Chair-elect of the SSF Board of Directors. We know you'll enjoy hearing Janet's newest talk!

Click here to read a past SSF blog from Janet Church

 

Click Here to View the 2017 SSF Conference Brochure with Schedule & Printable Registration Form

Topics: Sjogren's

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