Papercut and colored pencil art by Sheryl Aronson X 5

Thursday, April 22, 2010


Sjogren's (pronounced SHOW-grins)Syndrome is an autoimmune syndrome in which your own body attacks the exocrine, or moisture producing glands. The classic symptoms are dry mouth and dry eyes, but it can affect any system in the body, including the kidneys, gastrointestinal tract, blood vessels, liver and central nervous system. Patients often experience joint and/or muscle pain and fatigue as well.

According to the Sjogren's Syndrome Foundation's website, www.sjogrens.org, as many as 4 million Americans are living with this disease, 9 out of 10 of them are women. Some people have mild symptoms, others are debilitated by this disease. Since the symptoms are so diverse, and appear different in each person, it often takes up to 7 years to get a diagnosis.

Sjogren's Syndrome is chronic, there is no cure, and as of this time, no medications that control it. Most treatment is symptomatic, though some people have found that immunosuppressive medications are helpful in controlling intenal organ manifestation. There are many over the counter products that help, such as a variety of eye lubricants, saliva substitutes, nasal moisturizers, etc. There are 2 prescription medications that help increase saliva: Evoxac (pronounced EE-vo-zak),and Salegen, and one prescription eyedrop which helps increase tears, Restasis.

I was diagnosed with Sjogren's about 5 years ago, by luck. I went to the doctor for something or other. He wasn't there, so I saw someone else in his practice. With my own doctor, I would just talk about the current issue, but with this new doc, I had to catch him up on all the things that had been going on. He put it all together, and said it sounded like Sjogren's. He sent me to a rheumatologist, who confirmed it. My first symptoms, chronic pain in my hip, arm and neck, had started years before, but I never thought of them as connected (Other than in the 'hip bone's connected to the neck bone' kind of way- that sounds very uncomfortable). Several years before my diagnosis I had to give up wearing my contact lenses, which I had worn since age 16, because my eyes were too dry.
These days I am doing really well. I have a little pain, and fatigue some days, but I have saliva, thanks to Evoxac, and tears, thanks to Restasis. I take way more medications than I like, but they seem to be doing the trick, so I will stick with them. (more on that in a future post).

APRIL IS SJOGREN'S SYNDROME MONTH! The Sjogren's Syndrome Foundation is doing a '30 Days to Imagine Having Sjögren's' campaign, with one statement for each day to educate people about Sjogren's. Since I am starting late in the month, I am posting 5 today, more to come in future posts. Try imagining what each of these situations would feel like...
1. IMAGINE seeing ten doctors over ten years and still not knowing what you’ve got.
That is Sjögren's!
2. IMAGINE having chronic fatigue that can take the living out of life.
That is Sjögren's!
3. IMAGINE your dry mouth and tooth decay is connected to an autoimmune disease. That is Sjögren's!
4. IMAGINE your dry mouth makes you lose your public speaking career.
That is Sjögren's!
5. IMAGINE that it’s terrifying to be without your water bottle to alleviate your dry mouth. That is Sjögren's.


1 comment:

  1. Dear Sheryl, TY for this opportunity to share Sjogren's. I too have Sjogren's and Fibromyalgia + a disorder called LICHEN SCLEROSIS. I retired from a job of 18 years that I loved because of Sjogren's and in the process lost my medical insurance. So I have tried to manage this disease on my own. It has progressed, landed me in ER(AGMC) and the hospital asking ME what Sjogren's was. NOT GOOD.

    I loved receiving the 30 days and ways of Sjogren's. It explained a lot to me that I found I could not convey to others.
    Especially the chronic fatigue.