In the Spotlight – December 2013 Suzanne Sheaffer
December 19, 2013
Every day, countless families, scientists, caregivers, donors and volunteers contribute time, energy and passion to our mission to find a cure for arthritis.
We are proud to introduce a new series, In the Spotlight, which will highlight the stories of these special people, who through their dedication make the work of the Arthritis Foundation possible.
We will also share the special determination, spirit and will demonstrated by those with arthritis as they battle the disease. These stories remind us why the Foundation’s work is so critical.
We are inspired by stories like these every day and hope that you will be too. Together, we will find a cure.
For the more than 50 million Americans living with the disease, arthritis and pain go hand in hand. Suzanne Sheaffer, who was diagnosed with rheumatoid arthritis earlier this year, knows arthritis pain more than most. She lost her daughter, Sarah, to an arthritis-related disease last year.
“I’m not just living with it, I’ve lost from it,” says Sheaffer.
Born prematurely, Sarah endured health issues and required special care all of her life. A learning disability, asthma, scoliosis and chronic pain all impacted her quality of life from childhood and into young adulthood.
When Sarah was 22 years old, Sheaffer, a nurse, noticed a rash developing on her daughter’s face. As the rash continued to spread, her body started to crash, leading to a 39-day hospital stay. A muscle biopsy confirmed that Sarah had dermatomyositis, an uncommon arthritis-related condition marked by skin rash, muscle inflammation and weakness.
Sarah passed away 18 months after the diagnosis at the age of 24.
In her 30 years as a nurse, Schaeffer had never heard of arthritis causing death. Knowing first-hand how devastating arthritis can be, she is now dedicated to raising awareness not only about the disease itself, but about how it can be fatal.
Sheaffer established the Sarah Sheaffer Shining Stars Foundation to fund a $500 scholarship for high school students with arthritis and related diseases. Because students with arthritis often miss many days of school, their grades may prevent them from qualifying for scholarships. Her goal is to encourage these students to apply for college despite their hardships.
The Shining Stars Foundation also supports the Arthritis Foundation, which Sheaffer says greatly supported her family throughout Sarah’s illness. “They were our world,” Sheaffer says of the Arthritis Foundation Central Pennsylvania office in the Great Lakes Region. Doug Knepp, branch director, was a constant source of kindness and hope for Sarah and her family. “If you want to talk about a local chapter doing their thing, it’s Doug Knepp. He is absolutely amazing.”
In addition to the Shining Stars Foundation, Sheaffer raises arthritis awareness through her participation and platform in the Ms. Elite Ambassador American Beauties Plus Pageant. Using arthritis as a platform, she uses the pageant as a way to spread awareness and garner fundraising for research.
“Funding for arthritis research is my top priority,” says Schaeffer. “We have to continue to have that stream of money coming to the Arthritis Foundation so our researchers can continue the job and we can hopefully find a cure and better treatments for this disease. It devastates lives at every level. It’s not just older people, it’s our young children. It transcends everything and it attacks whoever it wants to.”