By Steven Taylor
CEO – Sjögren’s Syndrome Foundation
The Sjögren’s Syndrome Foundation (SSF) was saddened to hear about U.S. tennis star Venus Williams’ diagnosis of Sjögren’s syndrome and supports her courageous decision to step forward and share her diagnosis with the public.
On behalf of the 4 million Americans with Sjögren’s, we applaud Venus for shedding light on this serious autoimmune disease. Her courage gives hope to the many people who live silently with Sjögren’s because of the lack of awareness about this disease.
Although not always life-threatening, Sjögren’s can cause debilitating and life-long complications and have a profound effect on one’s quality of life. At the same time, many Sjögren’s patients fortunately live healthy and productive lives free of major complications.
What is Sjögren’s?
Sjögren’s syndrome is the second most common autoimmune rheumatic disease and 3x more common than better known related diseases such as Lupus and Multiple Sclerosis. Ninety percent of those who develop Sjögren’s are women.
The thirty-one-year old Venus Williams cited prominent symptoms of fatigue and joint pain as preventing her from currently continuing in the competition at the U.S. Open. Every patient, however, is different, and symptoms can be wide-ranging, making diagnosis that much more difficult. In fact, it can take a Sjögren’s patient as long as 6.5 years after onset of symptoms to obtain a diagnosis, a problem the Sjögren’s Syndrome Foundation is set to address as a major breakthrough goal this fall. Ms. Williams says she “is thankful to finally have a diagnosis,” and we are glad that she can now move forward, learn how to manage her complications and no longer wonder what is causing her debilitating symptoms.
Some of the key symptoms associated with Sjögren’s are listed below. Remember that not everyone will have all of the symptoms connected with Sjögren’s, and many of these symptoms can be indicative of other conditions. Also see the SSF website for many more of the symptoms that can be connected with Sjögren’s and what you can do about them.
• Dry eyes (complications include frequent eye infections, difficulty focusing and eye pain)
• Dry mouth (complications include dental decay and oral pain and infection)
• Muscle and Joint Pain
• Reflux (GERD)
• Difficulty swallowing
• Sleep disturbance
• Forgetfulness and other cognitive difficulties
• Numbness in the extremities
• Dryness throughout the body including skin and vagina
In addition, serious manifestations can occur with life-threatening lung involvement, vascular and central nervous system complications and difficulty with cognitive functioning. In fact, Sjögren’s can affect any body organ or system, increasing the problem of finding a physician who knows how to connect all of the dots and come up with a Sjögren’s diagnosis.
What can a Sjögren’s patient expect after diagnosis?
First, a Sjögren’s patient is not alone! Through Sjögren’s Syndrome Foundation support groups and national and regional patient educational meetings, it’s easy to meet others with this prevalent disease.
The SSF also offers many other resources to help patients cope with daily living.
Second, patients and their physicians need to recognize that symptoms can wax and wane, grow worse over time, stay the same or even improve. Many patients live very full and productive lives.
There is no cure for Sjögren’s, but symptoms often can be managed with over-the-counter drugs and products or prescription medications. Patients also can learn about coping strategies that can help them deal with such symptoms as chronic fatigue and pain.
Finally, know that there is hope. Several clinical trials using new biological therapies for Sjögren’s are in progress and others in the planning stages that may lead to better treatment of Sjögren’s. Research into what causes Sjögren’s – probably a combination of genetics, immune dysfunction, and an environmental trigger – is ongoing and one day will elucidate targets for new therapies and, we hope, a cure. The SSF encourages and supports research through a variety of initiatives including a research grant program, investigator meetings and working with federal government agencies and through coalitions to increase federal research funding.
If you think you have Sjögren’s, where should you go for help?
A rheumatologist is the physician who is most likely to diagnose and coordinate your care. For those whose predominant symptoms are dry eye or dry mouth, an ophthalmologist or dentist can play a major role in diagnosis and, if diagnosed with Sjögren’s, will become key members of your medical team. Other specialists may become involved in the treatment of Sjögren’s depending on the complication.
The Sjögren’s Syndrome Foundation (www.sjogrens.org) has numerous resources to help you. The SSF website, a DVD for newly diagnosed patients, brochures, and national and regional educational meetings provide a wealth of information that physicians and patients will find useful. Finally, the newest SSF handbook has just been published. The Sjögren’s Book, Fourth Edition, offers all those interested in Sjögren’s everything you ever wanted to know about Sjögren’s and more. Edited by national expert Daniel J. Wallace, MD, a Clinical Professor of Medicine at the David Geffen School of Medicine at UCLA based at Cedars-Sinai Medical Center, the book is packed with information about who gets Sjögren’s, what we know about how it develops, where and how the body can be affected, management and treatment, what’s on the horizon for the future, and how to manage daily living with the disease.
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This October, the Sjögren’s Syndrome Foundation will formally announce plans to achieve a new breakthrough goal of “shortening the time from the onset of symptoms to a Sjögren’s diagnosis by 50% over the next 5 years.” The SSF will be introducing national initiatives and programs to help educate the general public and healthcare professionals.
The Sjögren’s Syndrome Foundation is the national not-for-profit organization that serves Sjögren’s patients and the many people who support and treat them. The Foundation’s mission is to educate patients and their families about Sjögren’s syndrome; increase public and healthcare provider awareness; and encourage research to find better treatments and, ultimately, a cure for this devastating disorder. Additional information on Sjögren’s and the Foundation can be found at www.sjogrens.org.
My freind who has this desease is from the Philippines is their a DVD she can.buy instead of reading the long pamphlet re her medical problem she would find it easier to listen Reason her reading ability is not good regarding English as in.written.
Thank you for this interesting read about Sjogren’s Syndrome. It is unfortunate that so many people go undiagnosed but not surprising given how no one constellation of symptoms can be used to identify the condition.
One positive step is improved access to Sjogren’s Syndrome antibody blood testing. It has historically been difficult to find someone who has both an understanding of the condition and the knowledge to order the appropriate Sjogren’s Syndrome screening lab tests. Online Sjogren’s lab testing services have improved access to Sjogren’s antibody blood testing:
With luck, improved Sjogren’s screening will lead to earlier referral and treatment to doctors who can help patients manage their condition and restore their quality of life.
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