Learning what your new “normal” is when living with Sjögren’s can be a very difficult but an important process. Take a tip from Venus Williams about understanding what your body needs and never giving up.
A year after carrying the Olympic torch through the streets of London on World Sjögren’s Day, July 23, Venus once again stood up for all patients by appearing on Katie Couric’s daytime TV show "Katie" yesterday and discussed how she’s had to adjust her life in order to effectively manage her symptoms. When talking about her recent withdrawal from Wimbledon due to injury, Venus said “I have to be careful of how much I do now” and explained that it takes her more time to recover and that’s something she has to be ok with.
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 4.7, which is why in 2012 the SSF launched a 5-Year Breakthrough Goal:
“To shorten the time to diagnose Sjogren’s by 50% in 5 years!”
Venus opened up to Katie about her struggle with being diagnosed saying, "When you’re so tired it’s hard to explain but the quality of your life goes down. I’d go to the doctor and say I don’t feel good and they didn’t know why.”
After enthusiastically shooting down rumors about retiring, Venus added that she sees the present as her chance to get better and finally understand why she didn’t feel well before being diagnosed. Venus shows her courage by sharing her story as a way to help other patients. That is why the Foundation is thrilled to have her as the Honorary Chairperson of our Carroll Petrie Foundation Sjögren’s Awareness Ambassador Program.
We hope Venus inspires you to talk more about Sjögren’s in your life and take control of your health by joining as an SSF member to receive our monthly educational newsletter The Moisture Seekers and add your voice to our fight against Sjögren’s. Help us change the face of Sjögren’s and help all patients receive the care needed!
World Sjögren's Day was created to commemorate the birthday of Dr. Henrik Sjögren, a Swedish ophthalmologist, who discovered Sjögren's in 1933.
On July 23rd, the Sjögren's Syndrome Foundation will join with other Sjögren's organizations around the world to celebrate the 4th annual World Sjögren's Day and what would have been Dr. Henrik Sjögren's 114th birthday.
How Can You Help Make A Difference?
- Make a donation to World Sjögren's Day and help us continue to further Sjögren's research, shorten the time it takes to diagnose and encourage new therapuetics. Click Here to make a donation in honor of World Sjögren's Day. Every gift will go to support research and education for the disease that Dr. Sjögren devoted his life to.
- Help increase awareness and raise funds by creating your own personalized fundraising page by clicking here. Share your story and educate your family & friends about Sjögren's while raising much needed funds to help further the research efforts of the SSF.
- Click here to print a fact sheet and use it to share information about Sjögren's with your friends, family, neighbors, work colleagues and local community. This is an ideal opportunity to help raise awareness for this little known but very common disease.
You can make a difference!
Please comment below and share with us how you're planning to celebrate World Sjögren’s Day. Or let us know what it was like to talk to someone in your life about Sjögren’s.
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.
Q. Is depression common among Sjögren’s patients?
A. Depression is a mood disorder with symptoms ranging from feelings of excessive sadness, increased irritability, sleeplessness or excessive sleep, fatigue, impaired ability to concentrate, loss of appetite, loss of interest in once-enjoyed activities and loss of sexual drive to feelings of hopelessness and thoughts of suicide. Not all people who feel “depressed” have clinical depression, and not all people with clinical depression feel “depressed.”
Faced with a diagnosis of a chronic disease of unknown cause with an often variable and unpredictable course, patients can react with fear, anxiety and depression. As with many other chronic diseases, Sjögren’s syndrome (SS) patients report feeling depressed more frequently than do healthy individuals in the general population. In one study, 32% of SS patients reported “possible” clinical depression, which was significantly more frequent than in healthy age-matched female controls.
Symptoms of depression such as fatigue, altered sleep, a change in appetite, loss of interest and mood changes can be seen in medical conditions that can also be associated with Sjögren’s. These include anemia, thyroid disease and fibromyalgia syndrome. Treatment of these conditions can correct the symptoms that might otherwise be attributed to “depression.”
Fatigue is very common in patients with SS. Although fatigue is more frequently observed in SS patients with depression than SS patients without depression, most SS patients with fatigue are not depressed. Fatigue, as noted above, can be caused by anemia or thyroid disease but it might also be caused by Sjögren’s itself and as such may respond to treatment of SS.
After medical conditions that can mimic symptoms of depression are ruled out, traditional treatment of depression with support, counseling, psychotherapy and anti-depressant medications is effective in SS patients. If you think you might be depressed, remember that you are not alone and the feelings you are experiencing can be reversed. It is important that you speak with your doctor so that your symptoms can be evaluated and the proper treatment can be prescribed for you.
-Neil I. Stahl, MD
This article was first published in The Moisture Seekers, the SSF monthly member newsletter
This Sjögren's acronym was sent to the Foundation by a member's husband. He wrote this for his wife during Sjögren's awareness month in April and has allowed us to share it.
S- So dry – both my mouth and my eyes
j- Just feel miserable, much of the time
ö- Only others with Sjögren’s really understand what it’s like
g- Goggles, eye drops, gels, mints – I must’ve tried them all
r- Restasis – one magic medicine that can help
e- Every once in a while, a good day!
n- Never gonna’ give up, no matter how I feel
s- So tired, so sore, but tomorrow might be better!
Having positive support can be very important when living with a chronic illness. The Foundation encourages you to join a local support group, become a member of the Foundation or comment on blog posts and connect with others here.
Is there something you'd like to share with the Foundation- email us at email@example.com!
Missed the 2013 National Patient Conference? Get all the vital information you need on an audio CD!
Five of our most popular talks from the 2013 National Patient Conference held in Bethesda, MD are available for purchase as audio CDs. Each talk is 30-40 minutes long and comes with the handouts used by the presenter. Buy just the talks you want to hear or purchase the whole set!
$16 for Members
$30 for Non-membersClick here to learn about SSF membership!Remember, if you order online you must sign in first to receive the Member discount. If you have any questions about your login information or want to order the CDs over the phone, please call the Foundation at 1-800-475-6473.
Patients with Sjögren’s frequently suffer from decreased mucus/nasal secretions and dryness of the nose and sinuses. Here are the Sjögren's Syndrome Foundation's top 5 tips for treating your Dry Nose & Sinuses:
- Try a bedroom humidifier, which generally comes in two types. While more expensive, a self-sterilizing unit is ideal in that it continuously sterilizes and cleans the steam prior to admitting it into the air. A more modestly-priced humidifier is adequate but must be cleaned at least twice a week to limit the possibility of circulating fungus in the air. For a Sjögren's patient, an optimal range of humidity is between 55-60% regardless of the ambient temperature.
- Enjoy high humidity environments, such as a steam bath, although remember that hot and long baths can dry out the skin.
- Avoid medications that increase dryness when possible. Many medications used to treat the upper respiratory tract such as decongestants and antihistamines are drying. Many other medication classes also may contribute to nasal/ sinus drying. When in doubt, check with your physician!
- Consider using over-the-counter (OTC) emollients such as Ponaris® to cleanse the nose, particularly if large crusts and debris are present. Also, use OTC nasal drops and buffered saline sprays regularly (as often as every hour) to lubricate the nasal passages and nasopharyns. Additionally, OTC gels such as Rhinaris® and AYR® work like sprays but last longer and are recommended particularly at night prior to going to sleep.
- Discuss the prescription medications Salagen® and Evoxac® with your physician. These have been shown to help Sjogren's patients with dry mouth, and potential added benefits for dry nose, sinuses and nasopharynx should be considered.
Share with us below what tips you’ve found the most helpful when treating symptoms associated with dry nose and sinuses.
The Sjögren’s Syndrome Foundation is excited to announce Venus Williams as the Honorary Chairperson of our Carroll Petrie Foundation Sjögren’s Awareness Ambassador Program. Venus’ courage to share her story makes her a great Awareness Ambassador and we are thrilled to have her leading the charge as our Chairperson,” said Steven Taylor, SSF CEO.
Awareness Ambassadors are on the front line for helping the Foundation achieve our 5-Year Breakthrough Goal! Our goal: “To shorten the time to diagnose Sjögren’s by 50% in 5 years,” will only e achieved by volunteers helping to educate their community and local medical professionals about Sjögren’s and its various manifestations.
Only when Sjögren’s is recognized as a serious disease will patients receive the care needed.
“By becoming an Awareness Ambassador, you will be helping to increase awareness of Sjögren’s – a very important cause I have been working on since I was diagnosed in 2011. Please join with me as we make a difference in how Sjögren’s is perceived in both the medical field and general public.” – Venus Williams
Help make a difference in your community and join Venus by becoming a Sjögren’s Awareness Ambassador!
Over four million Americans are estimated to have Sjögren's, yet fewer than one million have been diagnosed. Your voice will help us make Sjögren’s a household name! To learn more about becoming an Ambassador, please contact Kathy Ivory by phone at 800-475-6473, extension 213 or by email at firstname.lastname@example.org.
The SSF also wants to recognize The Carroll Petrie Foundation whose generous grant, supporting the Awareness Ambassador program, will allow us to provide the materials and support needed to increase awareness in communities across the United States.
Ranbaxy Pharmaceuticals, Inc. (RPI) has launched a generic version of cevimeline, the trade name for which is Evoxac®. The genericwill be marketed in the U.S. under an agreement with Daiichi Sankyo, Inc. RPI is based in Jacksonville, Florida. Cevimeline activates the M3 receptors of the parasympathetic nervous system and leads to increased saliva production. It was FDAapproved in January 2000 for dry mouth, which marked the second therapeutic that has been FDA-approved for a major complication of Sjögren’s.
Actemra® (tocilizumab) was approved in October 2012 by the FDA for use in rheumatoid arthritis and clinical trials will be launched in Sjoören’s this year. Actemra® is made by Genentech, a member of the Roche group. An interleukin-6 (IL-6) receptor inhibitor, the drug already was approved for use in systemic juvenile idiopathic arthritis. Jacques-Eric Gottenberg,
MD, of Strasbourg, France launched a study this year to investigate the efficacy of Actemra® in Sjögren’s patients.
The most recent company to work on developing a generic version of Rituxan® (rituximab) has run into delays. The South Korean-based company Samsung Electronics has temporarily ceased clinical development of its biosimilar drug. Earlier, Teva Pharmaceutical of Israel also halted development of a biosimilar for the same blockbuster drug. While exact reasons were not provided in either case, experts are on record as saying that the development of a biosimilar appears to be a trickier prospect than expected. Loss of patent protections are looming in both Europe and the U.S. for Rituxan®, which is a B cell-targeted biologic (specifically a chimeric anti-CD20 monoclonal antibody) produced in partnership by Biogen Idec and Genentech/Roche. It is FDA-approved for use in non-Hodgkin’s lymphoma, RA and most recently for Wegener’s granulomatosis and is currently undergoing clinical trials in Sjögren’s.
***This was first printed in the Fall 2012 Sjögren's Quarterly, the SSF medical and scientific newsletter that is distributed free-of-charge to thousands of healthcare providers in rheumatology, ophthalmology, optometry, dentistry and research.
Click Here for an SQ sign up form that you can take to your doctor and make sure they're informed about the latest Sjögren's information!
This year, show your doctors your appreciation by helping them stay updated on the latest Sjögren's information!
Purchase "The Sjögren's Book, Fourth Edition" for a physician (or physicians) in your life and the SSF will mail the book directly to them with a special card letting them know that it was purchased by you in honor of National Doctor's Day!
With this purchase, the SSF will give your physician a complimentary subscription to our professional newsletter, Sjögren's Quarterly, as well as brochures for their office.
With Sjögren's Awareness Month right around the corner in April, what
better way to show your doctor appreciation than informing their entire
staff about Sjögren's and raising awareness in your community!
Click Here for the SSF National Doctor's Day- I Appreciate My Doctor Order Form
How to order:
- Call 1-800-475-6473
- Fax the form to 301-530-4415
- Mail the form to the SSF Office: 6707 Democracy Blvd., STE 325 Bethesda, MD 20817