Sjogren’s Awareness: So, how did I get it?

This week a friend asked me how people get Sjogren’s Syndrome. Where Sjogren’s comes from is a good question. My first thought in response to the question would be: from Hell! I suspect other Sjogren’s patients, especially those who suffer with systemic symptoms and organ involvement would agree.

Personally I have no idea how I got Sjogren’s; medical scientists are still searching for the definitive answer to that question themselves. My friend asked if it was genetic, bacterial or viral. As far as researchers have been able to discover so far it appears it may be a combination of those factors that cause the illness to manifest itself.

Current thinking is perhaps more than one gene may be involved, but scientists are not certain exactly which ones are linked to the disease, because different genes seem to play a role in varying patient populations. Simply having one of the suspect genes will not cause a person to develop the disease; it appears some sort of trigger must activate the immune system. Scientists think that the trigger may be a viral (something like Epstein-Barr perhaps) or a bacterial infection. Some medical researchers are investigating whether maybe the endocrine and nervous systems play a role in developing Sjogren’s as well.

This is how researchers think it may work: A person who has a Sjogren’s-associated gene gets a viral or bacterial infection. The virus or bacteria stimulates the immune system to act, but the suspect gene(s) alters the attack, sending the fighter cells (lymphocytes) to the moisture producing glands initially, usually eyes and mouth. Once there, the lymphocytes attack healthy cells, causing the inflammation which damages the glands and keeps them from working properly. But Sjogren’s autoimmune reaction doesn’t always stop at the eyes and mouth; it can affect all moisture producing glands in the body, as well as other parts of the body including connective tissues, and organs such as the lungs and liver.

Basically how I usually describe it to people is that my body’s immune system started fighting something (virus / bacteria) in my body which means it was doing the job it was supposed to do, BUT then something happened to make it start attacking the healthy tissue instead, causing the autoimmune disease to manifest.

Because medical scientists still have no sure knowledge of the cause, it is no surprise that there is not yet a cure. No specific targeted Sjogren’s treatments are currently available either; there is no “go to drug” specifically for Sjogren’s. The best help patients currently have available are drugs to alleviate symptoms, to attempt to arrest the inflammatory process, and the immune-response.

You might think Sjogren’s is rare, yet it is not. Estimates are 1 in 70 people in USA / Canada have Sjogren’s. What is rare is getting a diagnosis because its symptoms vary from person to person, are often initially subtle and possibly even intermittent. It is estimated that most people wait an average of 5-7 years to get a diagnosis, but many more wait ten or more years and see multiple doctors in the process as they search for an explanation for the myriad of diverse symptoms Sjogren’s can cause, including excessive dryness of eyes, mouth, skin, digestive tract, etc., life-changing fatigue, chronic muscle and joint pain, organ involvement, neuropathies, and even increased lymphomas.

For more information on Sjogren’s I recommend:

“The Sjogren’s Book” (4th edition) edited by Daniel J. Wallace for detailed medical information on all manifestations of Sjogren’s and the science of autoimmunity in relation to it. It reads like a medical textbook, so best for those with medical knowledge or patients who have significant background regarding Sjogren’s.

If you prefer a less scientific read, I suggest “the New Sjogren’s Syndrome Handbook” (revised and expanded 3rd edition) by David J. Wallace which is exceptionally patient friendly.

For first-hand patient stories of getting diagnosed and living with Sjogren’s, Christine Molloy’s “Tales from the Dry Side: The Personal Stories Behind the Autoimmune Illness Sjogren’s Syndrome” is the best I have read.

All of the above are available via Amazon if you are unable to locate elsewhere, including your public library via inter-library loan.

http://www.sjogrens.org
http://www.sjogrenscanada.org

Tales From The Dry Side photo

Can you spare a dollar? Share a link?

I am VERY hesitant to do this on my blog, but I am asking if you might consider donating to this project, and if you are unable to, or do not wish to make a monetary donation, could you please consider sharing the link with others you know who might donate or who wish to learn about Sjogren’s Syndrome?

Kickstarter is an innovative way to make creative projects happen, when traditional sources are not available. Donation amounts can be as small as one dollar!

http://www.kickstarter.com/projects/63135010/publication-of-the-book-tales-from-the-dry-side

This book of thirteen stories about those who live with the often misdiagnosed autoimmune illness Sjögren’s Syndrome, includes my own personal story.

Christine Molloy a fellow Sjogren’s sufferer is the person publishing the anthology. Here is an excerpt from the “blurb” about the book (you will find the extended version , as well as two additional updates on the link above):

TALES FROM THE DRY SIDE: THE PERSONAL STORIES BEHIND THE AUTOIMMUNE ILLNESS SJÖGREN’S SYNDROME

Imagine for a second what life would be like if for years, you searched for answers to mysterious physical symptoms that were so severe, you could no longer participate in the daily activities of your life. What your life would be like if not only did the medical community doubt your sanity, but you begin to question it yourself. For approximately four million people in the United States, including tennis superstar Venus Williams, this is often a reality because they have Sjögren’s syndrome; an autoimmune illness that severely affects the moisture producing glands in the body. It is difficult to diagnose and even more difficult to effectively treat as there is no cure.

Thank you for your consideration, and for any help you can give….even simply becoming educated about Sjogren’s and spreading the word!