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What will you do today for World Sjögren’s Day on July 23rd?
People all over the globe are doing their part to raise awareness about Sjögren’s syndrome. In honor of Henrik Sjögren’s 111th birthday, Friday, July 23 is the 1st Annual World Sjögren’s Day!
So join with patients and advocates worldwide to spread information about Sjögren’s through your family, friends and communities; display a poster, handout brochures or just simply tell someone about Sjögren’s. Take advantage of this international awareness effort to do your part!
We also hope you will also consider making a special gift to commemorate what would have been Dr. Henrik Sjögren’s 111th birthday. Every gift will go to support research and education for the disease that Dr. Sjögren devoted his life to. Our goal is to have 111 individuals donate by the end of day today! Please join with us so we can reach that goal together.
Make a donation, raise awareness and help us commemorate the 1st annual World Sjögren’s Day!
Full Article >>Purchase Your Own Team Sjogren's T-Shirts and Car & Window Static Stickers!
Now available in the SSF Store are our brand new Team Sjögren’s t-shirts, as well as static car and window stickers.
With our new t-shirts, now everyone can be a part of Team Sjögren’s. On the front of the shirt is the Team Sjogren's logo. The reverse of the shirt looks like this:
T-shirts are $12 each + shipping. Available in Medium, Large and X-Large sizes.
Tune in on Sunday, May 9th to learn about Sjögren’s
Focus on Females, a radio healthcare program whose mission is to "make you an expert on your individual medical problems through dynamic and interactive educational programs," will feature a radio clinic on Non-Ophthalmic Manifestations and Treatment of Sjögren’s this Sunday, May 9th from 1-2pm EST!
Ophthalmologist Steven L. Maskin, MD, FACS, will be co-hosting this topic with rheumatologist Dan Small, MD. The radio clinic will stream live via the Focus on Females website on Sunday from 1-2pm EST (or if you live in the Tampa, Florida area you can check your local radio listings).
Anyone who wants to discuss Sjögren’s on the radio can call in before the show between 12:30 and 1 PM EST on Sunday, or during the show to ask a question or make a comment. The toll free number to call in is 877-969-8600.
And if you are not able to listen to the program live, don't worry because you will be able to listen to a podcast of the show any time! That podcast will be posted on the Focus on Females website after the show.
Results from a recent survey of 400 Sjögren’s syndrome patients showed that half of those surveyed experienced common symptoms such as dry mouth or dry eyes for three or more years before receiving an accurate diagnosis from a healthcare professional. The survey also found that a lack of patient-physician dialogue about symptoms such as dry mouth contribute to delayed diagnosis.
“Sjögren’s syndrome symptoms are often similar to other serious conditions such as lupus and rheumatoid arthritis, or can be mistaken for signs of the natural aging process, so healthcare professionals have a lot to consider when making a diagnosis,” said Michael Brennan, DDS, MHS, Director of the Sjögren's Syndrome and Salivary Disorders Center at Carolinas Medical Center in Charlotte, N.C. “Additionally, diagnosing the condition is challenging because patients often try to cope with symptoms of the disease without talking with a doctor.”
For instance, untreated or undiagnosed patients with dry mouth may combat this symptom by drinking more water. However, doing so can actually wash away existing saliva which contains beneficial components not found in water, and thereby make dry-mouth symptoms worse.
“It took more than seven years and five doctor visits before I was finally diagnosed with Sjögren’s syndrome,” said Kathy McCarren from Alexandria, VA. “It’s scary to imagine that even though my dry-mouth symptoms were painful and interfered with my ability to chew and swallow food, they could lead to even bigger health problems down the road. It wasn’t until my rheumatologist and I discussed my dry-mouth symptoms in more detail that I was tested for Sjögren’s syndrome. I’m now taking the necessary steps to manage my dry-mouth symptoms.”
A new website, www.livingwithdryness.com, created by Daiichi-Sankyo, the makers of Evoxac, was launched this month to be a resource for patients who think they might have Sjögren’s. The website is full of plenty of information about living with dryness caused by Sjögren’s as well as tips for opening a dialogue with your doctor to discuss these issues.
Every new resource that helps to raise awareness about the seriousness of Sjögren’s is a great asset and that is why we are very excited that Daiichi-Sankyo created livingwithdryness.com and launched the site just in time April Sjögren’s Awareness Month.
Full Article >>The Sjögren’s Syndrome Foundation firmly believes in the concept of educating students – our leaders of tomorrow – about Sjögren’s. As such, the SSF is partnering with professional societies to generate greater awareness of and interest in Sjögren’s on the part of students pursuing careers in medical and scientific research.
That is why the SSF is supporting Student Fellowships in Sjögren’s through various professional organizations:
Visit the SSF Student Fellowship page to learn more details about the Foundation's Student Fellowship program.Full Article >>
- American College of Rheumatology (ACR) REF Preceptorship Program
- Contact Lens Association of Ophthalmologists Education and Research Foundation (CLAO ERF)
- American Association for Dental Research (AADR)
EMPOWER YOURSELF
April 9 - 10, 2009
San Francisco, California at the
San Francisco Airport Marriott
(click here to download the brochure)
As a Sjögren’s patient, it’s easy to feel confused or overwhelmed by the abundance of information available about the illness and how it affects your body. But now there is a wonderful opportunity to empower yourself by Empower Yourself and take more control of your health and day-to-day living by learning from the best minds dealing with Sjögren’s. This April, join fellow Sjögren’s patients and their family members, as well as healthcare professionals and other experts who specialize in Sjögren’s, at the 2010 SSF National Patient Conference in San Francisco, California.
SSF programs are the best Sjögren’s patient education opportunities in the country. They have helped thousands gain a better understanding of Sjögren’s and will help you, too. This two-day event will feature an array of presentations from the country’s leading Sjögren’s experts – physicians, dentists, eye-care providers, and researchers – who will help you understand how to manage all key aspects of your disease.
Click here to visit the 2010 National Patient Conference page and learn more!
Full Article >>
We asked the Centers for Disease Control and Prevention (CDC) if it is safe for Sjögren’s patients to receive the yet-to-be-released H1N1 vaccine. Here is their response to us.
Note from the SSF: Like any medical decision, the Sjögren’s Syndrome Foundation strongly recommends consulting your doctor before deciding whether or not to take the H1N1 vaccine.
From the CDC: A novel H1N1 vaccine is currently in production, and it may be ready for the public in the fall. The vaccine may be available as early as mid-October.
More specific dates can't be provided right now. This is because vaccine availability depends on several factors, including:
- manufacturing time, and
- time needed to conduct clinical trials
CDC has completed the following steps for creating a vaccine for novel H1N1 influenza (flu) vaccine:
- Isolated the novel H1N1 virus;
- Made candidate vaccine virus strains that can be used to create vaccine; and
- Provided this virus to industry so they can begin scaling up for production of the vaccine.
Five clinical trials of candidate novel H1N1 flu vaccines will begin soon. The trials will be conducted by the United States National Institute of Allergy and Infectious Diseases (NIAID). The 5 manufacturers who make seasonal flu vaccines are also conducting their own novel H1N1 flu vaccine trials.
Vaccines, like any medication, can have side effects. But, in general, it's more dangerous to get sick with the virus than it is to get the vaccine. If you have any questions or concerns about whether you should get the novel H1N1 vaccine due to Sjögren, talk to your doctor.
In 1976, a type of flu vaccine called the swine flu vaccine was associated with Guillain-Barré syndrome (GBS). GBS is a serious disorder that attacks the nervous system. Since then, flu vaccines have not been clearly linked to GBS. However, if there is a risk of GBS from current flu vaccines, it would be no more than 1 or 2 cases per million people vaccinated.
The risk of the flu shot causing serious harm is extremely small. But, a vaccine, like any medicine, may rarely cause serious problems, such as severe allergic reactions. Yet, almost all people who get the flu vaccine have no serious problems from it.
Until a vaccine is available, the best way to help fight novel H1N1 influenza (flu) is to cover your nose and mouth with a tissue when you cough or sneeze, then throw the tissue away. Wash your hands often with soap and water, especially after coughing or sneezing. Stay home if you're sick, and limit contact with others to keep from infecting them.
For more information about the novel H1N1 flu and vaccination, please visit the following CDC websites:
Full Article >>
- Novel H1N1 Vaccination Recommendation from the CDC website.
- Press Release: CDC Advisors Make Recommendations for Use of Vaccine Against Novel H1N1 from the National Center for Immunization and Respiratory Diseases
- Prevention and Control of Seasonal Influenza with Vaccines: Recommendation of the Advisory Committee on Immunization Practices
- Information about the Novel H1N1 Flu (Swine Flu) from the National Center for Immunization and Respiratory Diseases
Research shows improvements in tests detecting the SS-B antibody.
The following article is reprinted from the National Institutes of Health News website.
For the thousands of Americans who will be evaluated this year for the autoimmune disorder primary Sjögren's syndrome, their doctors will likely test for two antibodies that are often associated with the condition. The problem is today's standard blood tests detect the more strongly associated antibody, called SSB, only about half the time, making the meaning of a negative result uncertain.
But these numbers could one day improve. Scientists at the National Institute of Dental and Craniofacial Research (NIDCR), part of the National Institutes of Health, report online in the journal Autoimmunity that a rapid, automated test now under development called LIPS identified the SSB antibody correctly three out of four times and with perfect accuracy. It also detected a second antibody, SSA, about as well as today's standard assays in the group's initial study of 82 people, 57 of whom had well-characterized primary Sjögren's syndrome.
"This is just step one in our work to improve antibody detection for Sjögren's syndrome," said Peter Burbelo, Ph.D., lead author on the paper and a scientist at NIDCR. “With further refinements, the percentages will only get better."
Burbelo and colleagues also reported using LIPS to profile additional antibodies of interest that may be related to other largely unrecognized manifestations of the syndrome. These first-pass antibody profiles have the potential to help scientists define for the first time a range of clinical subtypes of primary Sjögren's, which could greatly improve diagnoses and possibly better target treatment.
Primary Sjögren's syndrome is a chronic autoimmune disorder that affects about 4 million Americans, 90 percent of whom are women. Scientists have long thought the syndrome is triggered when white blood cells mistakenly attack the body's moisture-producing glands, typically causing chronic dry mouth, dry eyes, and arthritis.
But other Sjögren's-related health problems continue to be reported in the medical literature, including lymphoma, thyroid dysfunction, painful peripheral neuropathy, and gastrointestinal problems. These seemingly phantom symptoms remain poorly defined, diagnostically controversial, and suggest a more systemic and yet-to-be-defined underlying pathology.
That's where LIPS enters the picture. Short for luciferase immunoprecipitation technology, LIPS is a traditional bait-and-bind diagnostic assay. The bait is any recombinant laboratory-made antigen, or segment of a protein known to elicit an antibody response, that is then fused to an enzyme similar to the light-producing luciferase that produces the flash in fireflies.
According to Burbelo, this hybrid antigen is incubated in solution with a drop of a person's serum. If the antibody of interest is present, it will bind to the bait. Thereafter, the entire antibody-antigen complex attaches to small beads that are then measured by its firefly-like light emission. The greater the intensity of the light flash, the more target antibody there is bound to the antigen.
What makes LIPS different from other antibody tests is its extreme sensitivity, or ability to correctly detect an antibody of interest. Burbelo said this stems from selecting mammalian cells and its biological machinery as the recombinant cloning vector to make the antigens. They more closely resemble human cells than the non-mammalian sources typically used today to make test antigens, such as the bacterium E. coli.
"Antibodies must see the natural three-dimensional shape of an antigen to recognize it," said Burbelo. "With today's tests, the assumption is an antigen's three-dimensional shape will be retained once it's produced and affixed to plastic. But typically that's not the case. Antibodies will recognize a stretch of amino acids here and maybe there. They won't see other pieces of the protein that have degraded and lost their natural conformations."
"With LIPS, more of the three-dimensional shape is retained, and that heightens the sensitivity," he continued. "For example, an ELISA [Enzyme-Linked ImmunoSorbent Assay] typically has a dynamic range of between 5 and 15,000 units of signal. A unit of signal is the measure of light intensity. In other words, how bright is the test’s green or red signal? With LIPS, we see samples that range from zero to sometimes over a million units of signal."
This zero-to-million diagnostic window allows Burbelo and colleagues to more objectively measure any antibody response associated with an autoimmune disorder. It also suggests LIPS may have the potential to detect most developing autoimmune disorders before they become symptomatic, more closely monitor the ups and downs of a patient's antibody counts over time, and track the immunological outcome of an autoimmune treatment.
To date, Burbelo and colleagues have published intriguing data involving LIPS and a range of autoimmune conditions, from type I diabetes to herpes simplex virus. In the current study, they began by applying their new tool to the Sjögren's-associated antibodies, SSA and SSB. But they did so with a diagnostic twist.
"Traditionally, the SSA antigen consists of two proteins — Ro52 and Ro60 — that are conjoined and anchored on the plastic diagnostic assays," said Mike Iadarola, Ph.D., an NIDCR scientist and senior author on the study. "We teased apart the two proteins to present their full three-dimensional shape and were able to measure the antibody response to each separately."
The group found that 42 of the study's 57 previously diagnosed Sjögren's patients had antibody reactions against a segment of the Ro52 antigen that does not elicit a response in today's ELISA tests, a sign of the LIPS assay's greater sensitivity. Overall, LIPS detected antibody responses against each protein in about 60 percent of patients, roughly equal to an ELISA, but with a far greater dynamic range and perfect specificity.
The scientists then decided to test for other conditions not traditionally linked to Sjögren's syndrome but that occasionally — and bewilderingly — have been reported in some patients. "We hypothesized that if we made antigens for the thyroid, stomach, and peripheral nervous system, LIPS could pick out the subset of patients with antibodies against these tissues," said Iadarola.
And it did. The scientists found 14 percent of their Sjögren's patients had antibodies against the thyroid antigen, 16 percent had antibodies against an antigen associated with autoimmune gastritis, and four percent had antibodies linked to an autoimmune attack of the eye's peripheral nerve.
These findings suggest that LIPS may be used as a substitute for more invasive and expensive procedures typically used to diagnose these peripheral conditions. "Again, this study is just a start," said Burbelo. "All of these tests can be performed on the automated robotic machine in my laboratory, and we can do thousands a day. There's more data to come."
The paper is titled, "Sensitive and robust luminescent profiling of anti-La and other autoantibodies in Sjögren's syndrome." The authors are Peter D. Burbelo, Hannah P. Leahy, Alexandra T. Issa, Sandra Groot, James N. Baraniuk, Nikolay P. Nikolov, Gabor G. Illei, and Michael J. Iadarola. The paper was published online on August 3, 2009.
The National Institute of Dental and Craniofacial Research (NIDCR) is the Nation’s leading funder of research on oral, dental, and craniofacial health.
The National Institutes of Health (NIH) — The Nation's Medical Research Agency — includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. It is the primary federal agency for conducting and supporting basic, clinical and translational medical research, and it investigates the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit www.nih.gov.
Full Article >>twitter.com/SjogrensCEO
Steven Taylor, CEO of the Sjogren's Syndrome Foundation, keeps busy year round helping to raise awareness about Sjogren's. Now you can see just what he and the Foundation are up to by following him on Twitter!
Visit his page at twitter.com/SjogrensCEO to learn how Steve is fighting daily to make Sjogren's a household name.
Full Article >>The SSF has joined with the National Health Council and its members in putting patients first!
The lack of effective health care coverage is one of the most important issues facing our nation. Nearly 50 million Americans have no coverage at all. Many more have coverage that does not provide for their basic health and longterm care needs. The problem is especially acute for Americans with a chronic disease or disability – like Sjögren’s patients and others represented by the National Health Council.
That is why we have joined the National Health Council's Campaign to Put Patients First.
With the National Health Council, we support health care that
- Covers everyone
- Curbs costs responsibly
- Abolishes exclusions for pre-existing conditions
- Eliminates lifetime caps
- Ensures long-term and end-of-life care
On behalf of the more than 133 million people with chronic diseases and disabilities and their family caregivers, we urge the Administration and Congress to enact specific solutions that guarantee effective and affordable health and long-term care coverage for all Americans.
Click here to sign the petition, and add your voice to the group that has chosen to Put Patients First.
Full Article >>
