Is there any speculation as to what’s driving this big upswing in the diagnosis of men and children with Sjögren’s?
My gut feeling is that it has to do with the improvements in awareness and medical and dental education in recent years. The Sjögren’s Syndrome Foundation (SSF) has spent years trying to train the physicians and nurse practitioners about how prevalent and serious the disease is. We finally have a celebrity who unfortunately was diagnosed with Sjögren’s and although nobody likes to see somebody become ill, it has done a lot to help the entire public realize how serious it is, particularly the idea that people look a lot better than they feel and that it may take years to diagnose it unless you take the symptoms seriously.
I can tell you at the University of Pennsylvania, where I work, the oldest medical school in the United States, we only started giving our first Sjögren’s lecture to the first year medical students about four years ago. And that was only after years of me fighting with the curriculum committee to get it included in the rheumatology course for the first year students. So, we’ve made a lot of progress and I think that’s an example of the benefits of all this work.
-Frederick B. Vivino, MD, MS, FACR
This "Question & Answers" article was first printed in the The Moisture Seeker, SSF's patient newsletter for members.
You are the voice of the Sjögren’s Syndrome Foundation and the reason for its existence. April is Sjögren’s Awareness Month and we want to help by giving you 30 ways to increase awareness through a different Sjögren’s fact or tip every day on our Facebook and Twitter pages.
Awareness comes in many forms and we encourage you to follow us for the next 30 days and look for opportunities to talk about Sjögren’s and the SSF in your life. You can help make Sjögren’s a household name!
#TipTuesday: Talking about your disease can help reduce the anxiety associated with a chronic illness, but the SSF knows how difficult that can be when friends, family and some physicians can’t even pronounce Sjögren’s (SHOWgrins). With an estimated 4 million Americans living with Sjögren’s, do the people in your life know how to pronounce it?
Please share this with your family and friends to help raise awareness of Sjögren’s this April!
As with any year-end non-profit donation, the age-old questions still exist - “where do my donations go?” and “what impact will they make?” As CEO of the Sjögren's Syndrome Foundation (SSF), I take great pride in being able to answer those questions by sharing with you the many accomplishments that have been achieved by the SSF thanks to the generosity of our donors.
This year, I am excited that we have, once again, seen amazing progress made in the fight against Sjögren’s. Just this past month, as you may have heard, Oklahoma Medical Research Foundation completed the first genome-wide study of Sjögren’s where six Sjögren’s genes were identified. This is the first-time that potential genes have been connected to Sjögren’s and surely gives hope for future researchers to investigate causes, progressions and treatments at the Sjögren’s genetic level. Most exciting, is that this research was completed by two SSF Research Grantees, Dr. Kathy Moser Sivils and Dr. Christopher Lessard. Their research grants were funded by your generous contributions to the SSF and, once again, show that your donations are having a direct impact on Sjögren’s research and, specifically, this big breakthrough in Sjögren's.
That is why I appeal to you today to renew your support with a generous tax-deductible year-end gift. Your support will allow the SSF to continue funding life-changing Sjögren’s research while also helping to further the SSF’s efforts to better the lives of those living with Sjögren's.
I also am proud to share a few additional milestones achieved this past year thanks to your support. The SSF:
- Awarded six (6) Innovative Research Grants and three (3) Student Fellowships.
- Continued work on the first ever Clinical Practice Guidelines for how to treat, manage and monitor Sjögren's by receiving support from the American College of Rheumatology, American Dental Association and American Journal of Ophthalmology to present a draft for endorsement and publication.
- Held our annual National Patient Conference in Bethesda, Maryland with over 450 attendees and presentations from the country’s leading Sjögren's experts.
- Assisted with the Restoring Access to Medication Act (S. 1647), bipartisan legislation, recently introduced to the Senate in November 2013. This work was the continuation of my testifying before the House Committee on Ways and Means about the expense and difficulty with treating Sjögren’s with over-the-counter medication.
- Increased our awareness efforts by adding 130 Awareness Ambassadors (now 463 nationwide) who volunteer their time to increase Sjögren's awareness in local communities across the United States.
These are just a few of the things we accomplished in 2013 and, as you can see, your donations truly are impacting our efforts and the lives of Sjögren's patients. We are truly grateful to have such dedicated members, volunteers, event participants and donors that serve as the driving force behind all we do. I ask you to consider making a year-end gift so we can continue our efforts for all Sjögren’s patients in 2014 and beyond. Thank you in advance for your support and generosity and I wish you and your family a happy and healthy New Year.
With sincere appreciation,
Chief Executive Officer
The Sjögren’s Syndrome Foundation is excited to share that with the completion of the first genome-wide study of Sjögren’s, six new genes have been identified. Although this is only the very first 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.
This research was completed by the Sjögren’s Genetics Network (SGENE) that consists of an international coalition of researches led by scientists at the Oklahoma Medical Research Foundation, OMRF, include two SSF Research Grantees: Dr. Kathy Sivils (Moser), 2011 SSF Research Grant Recipient, and Dr. Christopher Lessard, 2013 SSF Research Grant Recipient.
“I can’t begin to explain how much of a difference the SSF grant made to this work. And this is just a milestone in the beginning of our journey to understand the genetic causes of Sjögren’s. I know it’s a long way off, but I hope these discoveries will open the door for researchers to find therapeutics that work at the genetic level to stop the disease,” said Dr. Sivils.
“This is a first step. Now that we’ve identified these genes, we can dig down and start to understand how these genetic variants alter normal functions of the immune system,” added Dr. Lessard.
This study required 2,000 patients samples that were collected world-wide and tested against 7,000 healthy samples. One of the main difficulties with Sjögren’s research, is collecting the patient samples because there’s not one 100% conclusive test for diagnosing Sjögren’s, which is why the SSF has focused on funding research specifically on novel diagnostics.
It’s because of your generous support that the SSF is able to award grants to talented researchers like Dr. Sivils and Dr. Lessard, who bring novel approaches to Sjögren’s research."I am proud that we were able to provide support for this groundbreaking research and look forward to future Sjögren’s breakthroughs,” said Steven Taylor, SSF CEO.
The SSF is currently focused on many research initiatives including: Research Grants, Clinical Practice Guidelines and our 5-Year Breakthrough Goal. We hope you will consider donating to the SSF Research Program and help us create a future filled with hope for all Sjögren’s patients and their families.
***This work appears in the journal Nature Genetics
Many people are surprised to realize that Sjögren’s ("SHOW-grins") is the second most prevalent autoimmune disorder, striking as many as 4 million Americans with an estimated 3 million cases currently undiagnosed. While early diagnosis and treatment are important for preventing complications with Sjögren’s, unfortunately reaching a diagnosis is often difficult and has been found to take an average of over 5 years from the onset of symptoms, which is why the Foundation launched our 5-Year Breakthrough goal in 2012: "To shorten the time to diagnose Sjögren’s by 50% in 5 Years."
Sjögren’s is a systemic disease in which the body’s immune system mistakenly attacks its own moisture producing glands. The hallmark symptoms are dry eye, dry mouth, fatigue and joint pain, but Sjögren’s can affect any body organ or system. Interstitial lung disease is the most common pulmonary manifestation in Sjögren’s, but pulmonary hypertension, amyloidosis, cystic lung disease and MALT lymphoma can also occur in the lungs. Few studies have been done in pulmonary manifestations of Sjögren’s, and few pulmonary experts who are also knowledgeable about Sjögren’s have been available to patients.
To change this, the Sjögren’s Syndrome Foundation is now partnering with The LAM Foundation to create Sjögren’s Pulmonary Clinics. We applaud their vision of creating these clinics to improve the care and treatment of patients. Our hope is that these clinics will provide our patients with expert specialized care and lead to an expanded interest in pulmonary manifestations in Sjögren’s and future studies that will increase our knowledge and improve future care in this field.
26 Pulmonary Clinics included in the LAM Network that will be expanded to become Sjögren’s Pulmonary Clinics.
Click Here to view Pulmonary Clinics
The Sjögren’s Syndrome Foundation is pleased to partner with the LAM clinics in this important endeavor.
"What the heck is that?"
"Well, that makes a lot of sense but now what?"
"I'm a man, I cannot have this."
“What? That’s all I need on top of Fibromyalgia (FMS).”
“I told you so!”
"I remember seeing that disease in nursing school a long time ago."
"Thank God for the diagnosis!"
"That explains a lot"
“WHAT IS THAT?”
“How is this going to affect my life?”
“I have what?”
Faces of Sjögren's- You are not alone!
As the Foundation announced in the January 2013 issue of The Moisture Seekers, we've added a new section to our website: Faces of Sjögren's.
With the launch of the SSF 5-Year Breakthrough Goal, 50in5: “To shorten the time to diagnose Sjögren’s by 50% in 5 years” we are also hoping to change how Sjögren’s is understood.
On this new web page, patients share their journey with Sjögren's starting from their first thought after being diagnosed to where they are currently. Now that you've read their first thought, find out what happens next and read their full story on our website.
After months of behind the scenes planning, the Sjögren’s Syndrome Foundation proudly announced the new 5- year breakthrough goal in the January issue of The Moisture Seekers. Our goal:
“To shorten the time to diagnose Sjögren’s by 50% in 5 years!”
With an aggressive timeline of goals to accomplish ahead, we have created this blog to invite you to be a part of this journey with us.
We want to keep you informed of the progress we make, the hurdles we meet and how we overcome them on our way to shorting the time of diagnosis by 2012. Most importantly, we will let you know ways where you and your community can help! We will also be posting general support information for patients and their families, including updates about new resources, educational programs, coping information from physicians and much more.
As many of you know, the average time from the onset of symptoms to a diagnosis is over 5 years and we all agree that this is too long! It will take an army to achieve our goal, but just imagine if we all band together to create a change.
Creating a future where physicians can start helping patients earlier, improve their quality of life and provide them with proper management and treatment guidelines. Imagine a future where Sjögren’s is taken more seriously by the medical community and general public, helping all patients.
To find out more about our 5-Year Breakthrough Goal, read the three main action items below:
- Increasing public awareness
Increasing awareness among the general public is not new to the SSF; however, with our new breakthrough goal, we will be focusing on more targeted communications, building relationships with the media and utilizing our Awareness Ambassadors (volunteers who help the SSF distribute awareness materials in their communities) to distribute educational information.
- Increasing involvement from our friends and partners
Increasing involvement from our friends and partners is going to be critical for us to achieve this breakthrough goal. We need to partner with our various stakeholders (pharmaceutical partners, corporate partners and friends/family) to help us spread the word about Sjögren’s. We will be asking them all to step up and help us fundraise as well as raise awareness. With their help, we will be making a concerted effort at media outreach, healthcare professional awareness and education as well as increasing our resources for patients. “Every partner and friend can assist in some way, and we will be calling upon everyone to step up and help us,” said Steven Taylor.
- Increasing education and awareness among healthcare professionals
Increasing education and awareness among healthcare professionals is something that current patients know is urgently needed. Trying to get physicians and dentists to understand Sjögren’s is a major challenge, and the SSF is determined to focus on this very problem. By increasing our visibility at professional conferences, by speaking at professional associations and by visiting one-on-one with physicians – we plan to start to change the face of Sjögren’s in the medical community. “We are determined to have Sjögren’s at the top of their mind when they hear a patient complaining of our hallmark symptoms of dry mouth, dry eye, fatigue or joint pain,” said Lynn Petruzzi, SSF Board Chairperson.
Overcome and take control of (a place or people) by use of military force.
Successfully overcome (a problem or weakness).
Together, we can conquer Sjögren’s!