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MY STORY, NOT AN UNCOMMON ONE… UPDATED 10/17/09. 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. Today, as many as four million Americans are living with this disease. 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.
WHY SJOGREN’S SYNDROME FOUNDATION (SSF.org)?
The Sjögren's Syndrome Foundation is a 501(c)(3) tax-exempt national voluntary health agency. Founded in 1983 the SSF provides patients with practical information and coping strategies that minimize the effects of Sjögren's syndrome. In addition, the Foundation is the clearinghouse for medical information and is the recognized national advocate for Sjögren's syndrome. I DO NOT BENEFIT MONETARILY IN ANY WAY FROM THE DONATIONS – DONTATIONS GO DIRECTLY TO SJOGREN’S SYNDROME FOUNDATION. I MERELY WANT THE AWARENESS RAISED AND FUNDS DESPERATELY NEEDED TO GO TO A GREAT FOUNDATION.
2009 Chicago Sjögren's Walkabout & Autoimmune Disease Health fair
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Saturday, October 24th
Yorktown Center
Lombard, Illinois
Join us at this family fun event for a casual stroll as we raise money & awareness for Sjögren's Syndrome !
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Where:
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Yorktown Center (look for us all in our purple Team Dour SSF awareness T-shirts)
203 Yorktown (Highland Ave./Butterfield Road), Lombard, IL
(visit the Yorktown Center Mall website for more info on the location/directions) |
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When:
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October 24, 2009. Health Fair 10:00AM - 12:00PM. Walkabout Steps off @ 11:00 AM
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My sister, Sue Handchetz, will also be participating in the “Walkabout” (as well as running a marathon for Sjogrens in Memphis – April, 2010) and has gone to extraordinary lengths to raise awareness and fundraising. Since Susan is running the awareness marathon next spring, both she and I will keep our Sjogrens fundraising pages out on firstgiving.com up and running. Thanks to my dear friend Joni, my husband Bob and my father for also maintaining Team Dour fundraising pages.
We do not benefit in any way from your donation other than raising awareness – the Sjogrens Syndrome Foundation is the recipient of your grateful donation.
Thank You!
THE DOUR FAMILY AND TEAM DOUR !
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