My beautiful wife, Laura, has been having health problems for the past 10 years. You cannot imagine the pain and frustration Laura has been through...one incorrect diagnosis after another...endless pain, medication and no relief.
We finally received a correct diagnosis..."Sjogrens Syndrome" I had never heard of this dreadful disaese before..I can tell you first hand, I would not wish this on my worst enemy, let alone my precious wife. This disase is very difficult to diagnose, and for the moment...it is without cure. The purpose of this page is to inform all who read it about, Sjogrens Syndrome. Please read Laura's story below and feel free to contribute to our cause for a cure.
Kindest Regards,
Bob Dour, Laura's Husband...
MY WIFE'S FUNDRAISING PAGE:
MY STORY, NOT AN UNCOMMON ONE… August 7, 2009
After having just completed my 4th week of chemotherapy and 10 years of cross-diagnosis and frustration, I have decided to join forces with the Sjögren’s Syndrome Foundation to support the “Sjögren’s 2009 Walkabout” in an attempt to raise awareness of this common yet little known autoimmune disease. I want to make sure that no other parent loses even one precious moment of time with his/her children.
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, 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, cardiac involvement, unfathomable complete periodontal disease requiring implants/veneers, and Lymphoma (Cancer of Lymph Nodes; Salivary Glands). While I am currently dealing with quite a few different disease elements to date, 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 really want this disease to get funding/attention 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. Back in Feb, 1999 I, unexpectedly and for no apparent reason, began a four month long battle of chronic 'fever of unknown origin over 100". One day I was completely healthy (nutrition/exercise/lifestyle/checkups), the next wondering "what the hell just happened?" The next ten years entertained Lupus, Crohn's, viral meningitis, and more fun. Did a virus set off Sjogrens and related autoimmune diseases or was I genetically predisposed to the inevitable? Hopefully needed funds will allow scientific research to pursue the big question of "viral exposure vs. genetics".
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.
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
203 Yorktown (Highland Ave./Butterfield Road)
Lombard, IL
(visit the Yorktown Center Mall website for more information on the location and directions) |
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When:
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October 24, 2009
Health Fair from 10:00AM - 12:00PM
Walkabout Steps off at 11:00AM
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