Over a period of 23 years, Inclusion Body Myositis slowly worked its way on Dagmar Slaven's body, the enigmatic disease turning her immune system against her own body and relentlessly attacking her tissues, leaving her weak and wheelchair bound. So little was known about the rare disease that even the medical community is baffled.
Slaven, born a German, met her American husband Bill who was a soldier stationed in Germany during the Vietnam War. After marrying ang having two sons, they moved to Weymouth where she started working as a bilingual interpreter for companies like Honeywell and Bausch and Lomb.
Until Myositis slowly attacked in 1986. She noticed herself increasingly losing muscle strength and constantly fatigued. She shrugged it off as part of aging but was eventually diagnosed with Lupus, another anti-immune disease. A muscle biopsy taken three years later revealed that it was a form of Myositis which can be treated with certain medication.
"It can be devastating," Slaven said – not just the disease itself, but also the lack of information available to sufferers. "Without the Internet, I would be lost."
Over the years she has learned that knowledge empowers a rare disease patient, and so recently Slaven has worked to spread awareness of the disease and lend support to fellow patients through a website documenting her story and several fundraisers she organizes with her husband Bill.
"I had to grow into my disease before I could write about it," she said. "It makes a huge difference to know that you're not alone."
Read this article by Joseph Markman on the Braintree Patch to learn more about the remarkable Dagmar Slaven.