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An Open Letter To Those Without Sjogren’s Syndrome

What I would like you to know is that I have a mostly invisible, chronic illness called Sjogren’s Syndrome. Life as I know it, is unpredictable and changes daily for me. Just because you cannot see those changes or their impact on my daily functioning, does not mean that they are not real.

Most people have never heard of Sjogren’s Syndrome. And for the small number who have, they mistakenly believe that it is only a simple and benign case of dry eyes and dry mouth. In the spirit of informing those who wish to understand…

Please understand that I have limitations. My energy, emotional and pain levels are constantly fluctuating. What you may see when you…

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Featured

 The Challenge of Identifying Sjogren’s Syndrome

The main symptoms — dry eyes and mouth, fatigue and limb pain — are common complaints associated with any number of health problems.

Articles of Interest

Explainer: what is Sjögren’s syndrome, the condition Venus Williams lives with?

It’s tricky to diagnose This condition is as challenging to diagnose as it is to manage. General symptoms, such as unexplained fever, involuntary weight loss, pain, fatigue, and even dryness, are not specific to this illness, and can delay the diagnosis for years. Inflammation of the muscles, joints, skin, nervous system, kidneys or lungs – which may lead to organ failure – can also mislead, as this can mimic other diseases such as rheumatoid arthritis, lupus or multiple sclerosis.

Arrogance and the average physician..

As I routinely visit the online Sjogren’s Forum, I see daily posts from people describing the horrible, rude and dismissive treatment they receive from their physicians. Their symptoms are often minimized, ignored or left untreated.

Food, Fashion, and the Future: Exclusive Interview With Tennis Great Venus Williams

As a tennis superstar, almost everybody knows her name, but fewer people know she has a debilitating autoimmune disease called Sjögren’s syndrome. She went on a plant-based diet to treat the disorder and defied the odds when she came back to the courts and started winning again.

No Easy Answers for Those Who Share Williams’s Disease

It often starts out as an uncomfortable feeling in the eyes and mouth. Patients say their eyes are dry and red, even though they are using eye drops. Often too, they say, their mouths are dry. Food is becoming tasteless. Some get swollen glands in their necks, making it look like they have mumps. It turns out those are the hallmark clinical signs of Sjogren’s syndrome, a mysterious disease caused by an overproduction of B lymphocytes, the cells of the immune system that make antibodies.

Patient Voices: Sjogren’s Syndrome

Affecting nearly four million Americans, Sjogren’s syndrome is a relatively unheard-of disease that is difficult to diagnose. Causing a strange constellation of symptoms, which may include dry eyes, dry mouth, joint pain, chronic fatigue or even organ inflammation, Sjogren’s (pronounced SHOW-grins) syndrome can severely impact one’s life. Here, five men and women speak about living with this condition.

Sjögren's Syndrome May Be Sparked by 'Killer' Immune Cells

A rare condition called Sjögren’s syndrome, which causes severely dry mouth and dry eyes, may stem from the improper function of immune cells called natural killer cells, a new study suggests.

The Voices of Sjogren’s Syndrome

Most people probably never heard of the disease until Ms. Williams’s announcement, but an estimated four million Americans have Sjogren’s, making it one of the most prevalent autoimmune disorders. Nine out of 10 patients are women.

Resources

Sjodry & Parched

My journey with Sjogren's Syndrome.

Sjögren's Foundation

When we were founded in 1983 the mission was simple: help patients cope with their Sjögren's, increase awareness, and support Sjögren's research efforts. Today, our mission has remained the same while we have grown into a multi-faceted organization that has expanded its outreach, increased its funding for research and education, and continued to raise awareness for this common, yet little known disease.

Sjögren's Society of Canada

To provide support and encouragement to all who have Sjögren’s Syndrome, and to provide information and education to patients, the public and the medical community as to the symptoms, condition and research findings.

Sjögren's Syndrome Program

Rheumatologists at the Penn Sjögren's Syndrome Center collaborate closely with specialists in ophthalmology and oral medicine to provide a complete diagnosis and treatment program for patients suffering from Sjögren's.

Sjogrens blog

Hi, thanks for dropping by. I am a female, over 40, living in Australia, who has Sjogren's Syndrome - an annoying, common but little known condition. I hope this blog is useful to you in some way...

SJS World

A worldwide Internet Community created for those who have Sjogren's Syndrome. It is a place for all to meet and share experiences and knowledge with others who live with Sjogren's in order to improve quality of life. The loneliness and isolation that often accompanies living with this *rare* disease need not be.

American College of Rheumatology

In the early 1900s, Swedish physician Henrik Sjögren (SHOW-gren) first described a group of women whose chronic arthritis was accompanied by dry eyes and dry mouth. Today, rheumatologists know more about the syndrome that is named for Sjögren and—most significantly for patients—can offer advice about how to live with it.

Arthritis Foundation

There is no single test to definitively diagnose Sjögren’s syndrome. Because Sjögren’s symptoms mimic those of many other diseases, it can often take years to make a proper determination.

National Institute of Arthritis and Musculoskeletal and Skin Diseases

Through basic research on the immune system, autoimmunity, genetics, and connective tissue diseases, researchers continue to learn more about Sjögren’s syndrome. The hope is that a better understanding of the disease and its causes will lead to better treatments and perhaps even prevention.

Oklahoma Medical Research Foundation

Our team is using powerful, cutting-edge technologies to gain new insight into a variety of autoimmune diseases. The goal of this study is to identify and isolate the genes responsible for Sjögren’s syndrome and to understand how genetic and environmental factors contribute to this disease.

Reasonably Well

Living Well With Sjogren's Syndrome.

Dry.org

Internet resources for Sjogren's Syndrome. Dry mouth. Dry eyes. Dry nose. Dry skin. Dry throat. Fatigue. Sjogren's Syndrome can cause any combination of these, and sometimes much, much more.

MedlinePlus

Researchers believe that Sjögren's syndrome is caused by both genetic and environmental factors. Several genes have been linked to Sjögren's syndrome, and some scientists think that an abnormal immune response to an infection—such as from a virus or bacteria—might trigger the disease.