Posts Tagged ‘autoimmune’

That’s pretty awful, right? Well, let me explain…

Before Venus Williams announced that she had been diagnosed with Sjogren’s Syndrome and would withdraw from the US Open because of it, Sjogren’s was the black sheep of the auto-immune disease family. Few people have heard of it, and those who have get it all wrong.

Suddenly, the media was reporting about Sjogren’s Syndrome and explaining that it caused joint pain and fatigue. Which is galaxies above the usual description of “dry eyes and mouth.”

I wish I only had dry eyes and dry mouth! I’ve had Sjogren’s Syndrome for several years now. I am medicated to the gills to ensure that I can move.

Yes, Sjogren’s Syndrome causes dryness…throughout the entire body, not only the mouth and eyes. With this disease, the immune system attacks the moisture making glands throughout the body. Eyes, mouth, esophagus, stomach, vagina, skin, joints, lungs, etc. Anything that requires moisture can be affected. Plus, with many autoimmune diseases, the resulting fatigue can be devastating.

Venus’ announcement gave an entire community hope. Hope that people would stop describing the disease incorrectly. Hope that money for research would be more available. Hope that someone with enormous resources would find a medication or treatment that could benefit all of us. Hope that people would recognize that an elite athlete has been hobbled by an invisible disease that makes us look like lazy sloths.

I know this is unfair to Venus. She’s probably thinking, “I don’t want to be a face to a disease! I just want to play tennis!”

I hope you do play tennis again, Venus! Because if you can go back to playing competitive tennis, I might be able to make beads again! I’ve had to stop because I can’t make the hand motion required! If you play tennis, I might be able to run up and down the stairs again!

If you find a treatment that helps you, I might be able to trade in the 92 different medications and supplements I take each week for something easier and better!

I’m not expecting something for nothing. I can give you tons of support and understanding if you need it. I’ve got your back!

Tomorrow, July 23rd, is World Sjogren’s Day 2010. Here are some things about Sjogren’s Syndrome.

• It is an autoimmune disease: your body’s immune system malfunctions for some reason and begins attacking your own body instead of the foreign bodies it should be attacking. In the case of Sjogren’s, your white cells attack your moisture-producing glands.

• It affects an estimated 4 million people, making it one of the most prevalent autoimmune diseases.

• It’s not just dry eyes and dry mouth. Dryness can affect all body systems, including digestive tract, joints, organs–pretty much everything! Personally, I have mildly dry eyes and mouth, but have joint pain mimicking rheumatoid arthritis, sun sensitivity, fatigue, and digestive problems.

• It is a progressive disease, meaning there is no cure and oftentimes continues to worsen.

• Because the symptoms of Sjogren’s are vague and widespread, it often takes years to diagnose it. It took me over 10 years to get a diagnosis! No one could figure out why my hands hurt constantly. Finally, I saw a neurologist who performed a carpal tunnel nerve test and said I needed to visit a rheumatologist.

• The majority of Sjogren’s sufferers are women, and a majority of them were diagnosed in their late 40s. I was officially diagnosed when I was 41, but had had symptoms since my early 30s.

• There is no medication available that primarily treats Sjogren’s. Most patients live with a cocktail of prescription drugs, over the counter drugs, and supplements to treat their symptoms.

For more information, please visit the Sjogren’s Syndrome Foundation. And pass this along so that others will become familiar with Sjogren’s!