2009 Chicago

"Sjögren's Walkabout"

October 24, 2009

TEAM DOUR

Fundraising for

www.ssf.org

National non-profit SS organization

SJöGREN’S SYNDROME (SHOW-grins)

Did you know that Sjogren's Syndrome affects upwards of 4,000,000 Americans and is the 2nd leading autoimmune rheumatic disease in the country?  This little know, yet severely disabling, disease can cause dry eyes, dry mouth, and dysfunction of internal organs, including the kidneys, gastrointestinal system, blood vessels, lungs, liver, pancreas, and nervous system.  Patients may experience extreme fatigue, joint pain, and have a higher risk of lymphoma.  I know, because I have watched first hand.  My sister, Laura, suffers from Sjogren's Syndrome. 

With the Chicago Walkabout almost over, I have decided to join forces with the Sjogren's Syndrome Foundation by joining Team Sjogren's and running the Rock and Roll  Marathon in April to continue to raise awareness and funds for the fight against Sjogren's.  I will be joined at the marathon by many others who support the battle against Sjogren's.  Together, we will be raising crucial funds toward life-changing research and educational programs offered by Sjogren's Syndrome Foundation.

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This is Laura's story...  (updated Oct 17,2009)

With my week @ MAYO CLINIC Jacksonville, FL now behind me and one week remaining until the Sjogren’s Walkabout event, I am more than determined to raise awareness about this common yet little known autoimmune disease. After having completed 11 weeks of ineffective chemotherapy, preparing for a more aggressive chemotherapy regimen and surgery to come, and enduring 10 years of cross-diagnosis and frustration, I have joined forces with the National Sjögren’s Syndrome Foundation to support the “Sjögren’s 2009 Walkabout”.

MY MISSION... While I have been blessed with a wonderful husband, two delightful girls, and an incredible support system of family and close friends (you know who you are, bless you), I want to do my part to aid in Sjögren’s Syndrome becoming more easily diagnosed, more effectively treated, and one day cured.  Since the significance of inheritance/genetics is not yet fully understood, I want to make sure that I afford my two girls every opportunity to have their potential predisposition to autoimmune disease resolved.

Sjögren’s Syndrome can be very difficult to diagnose since it is a systemic disease, but if patients and their physicians, dentists, eye care providers work together to look at the big picture, the level of complication and severity may be diminished.  Symptoms most often noted are severe dry eye requiring tear duct plugs, dry mouth, difficulty swallowing, severe inexorable dental decay, fatigue & joint pain but in cases such as mine, it is not uncommon for Sjögren’s Syndrome to also include vasculitis, pleurisy, corneal ulceration, rheumatoid arthritis, chronic fevers/pain, organ involvement, multiple pregnancy losses, unfathomable periodontal disease requiring implants/veneers, Lymphoma (cancer of Lymph Nodes/Salivary Glands) and add’l autoimmune diseases such as Lupus.  While I am currently dealing with different disease elements, I really do want the focus to be on Sjogrens as it seems to be the common link and/or instigator. While I feel a bit awkward opening my personal/medical life to others, I realize it is more important that this disease get the funding and attention desperately needed.

CANNOT PRONOUNCE IT? DON’T WORRY, JUST BETTER UNDERSTAND IT.

Sjögren’s Syndrome (pronounced SHOW-grins) is a chronic autoimmune disease in which a person’s white blood cells attack his or her moisture-producing glands.  As noted earlier, in addition to eyes and mouth, Sjögren’s increasingly involves other organs such as the kidneys, gastrointestinal system, blood vessels, lungs, liver, pancreas and central nervous system. Sjögren’s patients also have a vastly significant higher risk of developing Lymphomas.

Sjögren’s Syndrome (undiagnosed-misdiagnosed) symptoms may mimic Lupus, Rheumatoid Arthritis & Multiple Sclerosis. Because all symptoms are not always present at the same time and because Sjögren’s can involve several body systems, each symptom may be treated individually and does not get recognized as part of overall systemic disease. The average time from onset of symptoms to diagnosis is 6.5 years.

HOPES FOR EARLY DIAGNOSIS AND PROPER TREATMENT

All instances of Sjögren’s syndrome are systemic, affecting the entire body. Symptoms may remain steady, worsen, or, uncommonly, go into remission. While some people manage their discomfort, others suffer debilitating symptoms that greatly impair their functioning. Early diagnosis and proper treatment are crucial --- they may prevent serious complications and greatly improve a patient’s quality of life. In addition to the importance of improving diagnosis and treatment, finding the cause would prove invaluable as it would then work hand in hand with prevention.

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I hope you will consider supporting my effort by making a donation.  

Thank you,

Sue Handchetz and Team Dour