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Battling Scleroderma: Support for Jen Russo


My mom Jennifer, pictured above, is perhaps the bravest and strongest person I know. At just 42 she's been fighting a daily battle that no one, let alone someone so young, should be fighting.

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Background:
For the last 11 years, Jen has been battling an autoimmune disease known as Scleroderma (full story below). Scleroderma works by slowly attacking /hardening the skin around the face, hands, and neck. In addition to that, it slowly hardens the internal organs, forcing them to shut down over time -  the pain Jen is currently experiencing. This rare disease has no cure. Doctors only know how to treat the symptoms to give patients a more comfortable lifestyle. Most patients who are diagnosed, do not live more than 10 years after their diagnosis.  As you can imagine at year 11, we are now at the point that the disease has progressed so far, that Jen's only chance for an increased quality of life is a full lung transplant. 

This past week  we were told Jen has been placed at number 3 on the list for a full lung transplant at the University of California, San Francisco Medical Center. With that being said, once the call comes in, she will have to be up and ready to move within hours. While we are fortunate to have insurance to help offset some of the medical costs, living accommodations for Jen's recovery in San Francisco are not covered. If all goes well, we are expecting her to be living full time in the San Francisco area for a total of about 3 months, with additional trips and stays for the next year of her recovery.  


Between the trips back and forth from their home in Sacramento to San Francisco, short term living conditions in the Bay Area, time off of work, and maintaining a normal everyday life for Madelyn and Ava, we expect the costs associated with not only the surgery, but with the post recovery necessities, to be quite substantial. 

We are asking that if you are financially able, you consider donating to help Jen, Chris, Madelyn, Ava, and Bailey, during this time.  The next few months will bring many uncertainties, but we are hoping and praying that this is not a chapter filled with fear, but rather hope for a new beginning for Jen and our family. 

Thank you for taking time to read Jen's story and for considering donation. And of course, please don't forget to register as an organ donor. 

Jen’s Personal Story:
The date was March 19th, 2008, a date that would change my life forever. It was the day I was diagnosed with scleroderma. “Sclero-what”?? I had read about it online, but couldn't even pronounce the disease or grasp that I could have this hardly known autoimmune disease. It was rare, there was little known about it, and the worst part…there was no cure. All doctors knew to do, was to treat the symptoms… there is no way to stop the progression. After a week of testing at the Mayo Clinic in Phoenix, the doctor flat out told me that I had five or maybe ten years of life left. That was eleven years ago. After the initial shock, I’m blessed to have had many good years of stabilization and only small amounts of decline. This past fall however was the most progressive decline I ever had. I went from flying to Mexico for vacation in the summer to hardly being able to walk without getting winded in October. I began supplemental oxygen use in November “as needed” but I now use oxygen 24/7. I’m full of questions about the future. Will I get to see any of my daughters get married, will I get to hold a grand baby? Will I even get to see my youngest graduate from middle high and move onto high school. 

There are two classifications of Scleroderma, Localized and Diffuse. I have Diffuse Systemic Sclerosis. The disease mainly affects harding of the skin on my hands, face and chest. As for internal organs, it has attacked my vascular system, esophagus, and most notably my lungs. So that brings me to current day. The immunosuppressants that I’m currently on are not doing enough to stabilize the progression of damage occurring in my body. A lung transplant is my best and only option.

Scleroderma, or systemic sclerosis, is a chronic connective tissue disease generally classified as one of the autoimmune rheumatic diseases. The word “scleroderma” comes from two Greek words: “sclero” meaning hard, and “derma” meaning skin. Hardening of the skin is one of the most visible manifestations of the disease. 
There are two major classifications of scleroderma: localized scleroderma and systemic sclerosis (SSc). Systemic scleroderma can involve the skin, esophagus, gastrointestinal tract (stomach and bowels), lungs, kidneys, heart and other internal organs. It can also affect blood vessels, muscles and joints. The tissues of involved organs become hard and fibrous, causing them to function less efficiently. The term systemic sclerosis indicates that “sclerosis” (hardening) may occur in the internal systems of the body. There are two major recognized patterns that the illness can take - diffuse or limited disease. In diffuse scleroderma, skin thickening occurs more rapidly and involves more skin areas than in limited disease. In addition, people with diffuse scleroderma have a higher risk of developing “sclerosis” or fibrous hardening of the internal organs.

Besides wanting to educate others about the “little-known”disease of scleroderma, I also want people to understand the importance of organ donation. I would never want to wish death to anyone, but a donors gift of their body leaves a person like me with hope at a second chance at life. I can't imagine a better gift.
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Donations 

  • Ben Schepers
    • $30 
    • 4 yrs
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Organizer and beneficiary

Bailey Phillips
Organizer
Shorewood, MN
Chris Russo
Beneficiary

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