What some see as a disease that removes wrinkles and tans skin, others see it as slow mummification.
Doctors diagnosed Nancy Bader with Diffuse Systemic Sclerosis 10 years ago – a type of the disease more commonly known as Scleroderma. The computer technician complained of pain in the hands and swollen fingers for months, assuming it was carpal tunnel. Ten years ago, however, was the height of a historic spring flood in Jamestown. And Bader’s home, a cabin on Jamestown Reservoir, required her attention.
“The doctors told me not to fight that flood anymore,” Bader said. “They said ‘if you touch those sandbags, you’ll lose all your fingers.’”
Six months later, she couldn’t walk and her skin was hard, like a stone.
RARE, AUTOIMMUNE DISORDER
Scleroderma is a rare, autoimmune disorder in which the body over-produces collagen. Scleroderma impacts everyone differently. For some, it hardens and tightens the skin and outer body. For others, it also hardens tendons, muscles and internal organs.
Before the diagnosis, Bader liked to run and enjoyed many activities with family and friends, in addition to her work with computers.
“When it hit me, it took me down fast,” she said.
Doctors aren’t sure what triggers the over-production of collagen. What they do know is women are diagnosed more often than men. And, that there is no cure. Those living with the disease can often find treatments and accommodations to improve their quality of life.
Though she has pain every day and struggles with even small tasks like sitting, standing, texting, and getting dressed, Bader finds the positive.
In her research, for example, Bader learned that about 25 percent of people diagnosed with diffuse scleroderma die within eight years. Bader is grateful to have surpassed that mark.
“It’s painful every day. But to me, it’s just normal,” she said. “It’s nothing to cry about. People with diseases and disabilities learn to function. You’d be surprised.”
BADER’S CARE TEAM
Helping her function are members of the care team at Jamestown Regional Medical Center.
Among them is Amanda Lausch, a family nurse practitioner at the JRMC Wound & Hyperbaric Center.
Bader’s hands are one of her most overt signs of scleroderma. Her fingers are tender with calcium build up (calcinosis), delicate and bent at the joints (contractures) because of the hardened skin and tendons. After 10 years battling the disease, however, Bader said she is lucky to have all her fingers, as many others like her do not.
“Scleroderma is a tricky condition. It is important that an individual with the condition fully understands their condition. Not only does Nancy understand it, but she also educates others. She is very impressive,” Lausch said,
Lausch has more than 17 years of experience in specialized wound care. She also speaks and gives lectures on both wound care and scleroderma. Lausch and the wound team remove debris from Bader’s fingers.
“With Amanda, I started to get relief,” Bader said. “Keeping my fingers is the best thing that has happened to me.”
To clarify, keeping her fingers meant Bader could keep her job.
Until recently, Bader continued to work fulltime for her employer, Central Business Systems. When she could no longer serve as a computer technician, the owners allowed her to serve as bookkeeper full-time and currently part-time, as she is able.
“No one would have kept me employed, other than them. Central Business Systems took good care of me,” she said.
While the JRMC Wound & Hyperbaric Center helped and continues to care for her fingers, JRMC Rehabilitation helped Bader get back to walking and working after the original diagnosis. Recently with disease progression, she again utilized rehab to regain range of motion and strength working with Bill Atwood and Julie Schulz.
“Nancy is willing to adapt to the changes in her life with graciousness,” said Amy Walz, JRMC Occupational Therapist. “Those around her, in turn, strive to do all they can to guide her body’s comfort, motion and daily life demand to keep her physical body functioning, as well her underlying spirit and motivation that shines through.”
Bader is a “healthcare legend,” Walz said, saying Bader shares the journey of vicissitudes with her body’s changes, helping others around her understand the process of scleroderma and ways to cope in therapeutic ways with never-ending hope.
The JRMC Emergency Department also administered her regular infusions, JRMC radiology offers tests and imaging services so Bader doesn’t have to travel.
“I’m grateful to JRMC,” Bader said.
In addition to maintaining her employment – which Bader said helped her feel “normal” – Bader also traveled for clinical trials. Perhaps she won’t find a cure for herself, she said, but she might help find one for someone else.
“Once they figure out what causes it, then they can fix it,” she said.
Though she is no longer healthy enough to travel, Bader continues to advocate. She documents her journey at http://www.sclerodermajourney.com/.
To learn more about care at JRMC, call (701) 952-1050.