The Arthritis NewsletterSpring 2012
Thank You Venus!Written by: Marilyn Mulldoon
Most people are unaware of Sjogren’s Syndrome except perhaps first class athletes like myself and Venus Williams (ha, ha –the only thing athletic about me is how fast I can find a toilet!) I’ve had Sjogren’s for over 30 years. It took 18 years for a diagnosis; testing during that time proved negative but I knew instinctively something wasn’t right. Quarterly bronchitis, chronic sinus infections, repeat bouts of conjunctivitis and unstable vision, never-ending cavities, chronic digestive issues, vasculitis, etc. were always around the corner waiting like back alley thugs. Finally the diagnosis … I wasn’t remotely surprised, but rather at peace with the quiet confirmation that I had always known.
Sjogren’s syndrome (pronounced SHOW-grins), discovered by Dr. Henrik Sjogren, a Swedish Ophthalmologist in the early 1930’s, has sadly remained little known to date. In Sept. 2011, all that changed when tennis superstar Venus Williams left a major tournament due to health issues. Lengthy testing determined she has Sjogren’s syndrome.
Circling the globe in record time, the news caused a sensation and so, in 2011, Sjogren’s Syndrome finally came of age. Inasmuch as it grieves us to see an athlete of this caliber diagnosed with Sjogren’s, what we have desperately needed was someone with celebrity to come on-board and raise awareness of the disease. That fact that Venus was previously able to endure sicca (another term for Sjogren’s) symptoms while playing, especially in hot temperatures, speaks to her fitness and tenacity. People with Sjogren’s, especially Primary Sjogren’s, have extreme eye, ear, mouth, nose and throat dryness. We don’t swallow well and do not perspire efficiently, so how was she hanging on? It must have required heroic efforts on her part to do that. Our T-cells attack and destroy moisture and mucous producing glands, ergo we are always somewhat dehydrated. Sjogren’s, while often mimicking other autoimmune diseases, is systemic and can affect major organs and systems. Fatigue and inflammation are constant companions; we must be watched for lymphoma and so far, there is no cure.
I sincerely hope Ms. Williams will continue to learn more about our disease and speak out loudly. There are approximately 430,000 Canadians living with Sjogren’s and an estimated 4 million Americans. It is now ranked as the second most common autoimmune rheumatologic disease next to RA (and indeed, is often discovered co-existing in individuals who also have RA).
Go Venus, go!!!!!!!!!!