Twists and Turns:
Dear family and friends,
Life is unpredictable with its twists and turns. In May 2006 I was officially diagnosed with Sjogren’s Syndrome, in addition to the Rheumatoid Arthritis I already had. At first I felt immense relief as I finally had a name for the various symptoms I had suffered for years. My husband and I thoroughly researched the disease and discovered that Sjogren’s Syndrome is an autoimmune disease in which white blood cells attack your moisture producing glands. This little known, yet often disabling disease, can cause dry eyes and mouth and dysfunction of internal organs. Having Sjogren’s Syndrome also increases your chance, over the general public, of developing Lymphoma. At present, there is no official treatment for Sjogren’s Syndrome and no cure.
Initially, I experienced joint pain, muscle aches and debilitating fatigue. As with most Sjogren’s patients, I looked perfectly healthy but many days felt anything but. Life is unpredictable though and I would eventually learn how nasty this disease could become. Over the past 4 years I have had sepsis, a life threatening blood stream infection, three times. Over the past 3 years the Sjogrens’ has attacked my body causing complications in my cardiovascular system, gastrointestinal system, endocrine system and neurological system. I suffer from intense joint pain and damage, severe neuropathy and cognitive changes, diabetes and debilitating fatigue. The past 2 years have left me wheelchair bound and often bedbound, as my general health and wellbeing have continued to decline.
As a wife and mother, I dreamed of being a supportive spouse and involved parent. Life is unpredictable though and as I navigate the twists and turns of marriage and parenthood, my role is a very different one than I ever imagined. My husband is responsible for being the sole income, chief cook, chauffer, childcare provider and house cleaner; while still managing my medical and personal care. Our children have had to assume a new reality. A reality where mommy is usually unable to attend their recitals, pageants, sporting events and church activities. Instead they have had to adjust to me watching them “perform” on videotape and realize that most activities occur, if at all, with mommy in a wheelchair or while in bed. It is not the lifestyle that any of us want, but the one we have had no choice but to accept.
I hoped that one of the twelve medication and therapy options that I have tried, including a year of high-dose chemotherapy, would have stopped the progression of the disease. Life is unpredictable though and despite numerous specialists and therapies, the Sjogren’s along with the Rheumatiod Arthritis, has remained untreatable and is now life threatening. Recently my husband and I learned about STEM CELL TRANSPLANTS and the possibility of this as a treatment for the Sjogren’s. Our hope, that if successful, the STEM CELL TRANSPLANT will slow or stop the progression of the Sjogrens thus delaying further organ involvement and extend my life span.
The twist is that within the USA STEM CELL TRANSPLANTS, for autoimmune diseases, are not FDA approved; and I do not have the luxury of waiting for the possibility of future approval. The procedure is offered outside of the USA, but is not covered by insurance. The total cost, with airfare, is approximately $20,000. We are asking for your help in fundraising some of this expense. So, if you are able to give financially we greatly thank you! If at this time you are unable to contribute monetarily, please share with your friends and family about Sjogren’s Syndrome. The more awareness is spread, the greater chance for a cure!!
Jacque Frantz Wuchter and Family
- Ruggles Family
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