Community Corner

Local Woman Brings Attention to Rare Muscle Wasting Disease

Dagmar Slaven, of Weymouth, and her husband are organizing a fundraiser at Pond Meadow in Braintree on Sept. 22.

Over months and years, Dagmar Slaven slowly lost strength in key muscle groups, putting her in a wheelchair, unable to walk independently or even lift her arms for long periods of time.

What has been weakening her body for 23 years is Inclusion Body Myositis, a rare and relentless disease of the immune system that attacks healthy tissue. Slaven, a Weymouth resident who emigrated from Germany to raise a family with her husband four decades ago, discovered early on that little was known about the various types of Myositis, even in the medical community.

"Everything was so basic back then," she said. "I didn't have much to lean on."

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And so in recent years, Slaven has worked to spread awareness of the disease and lend support to fellow patients. Along with a website documenting her story, Slaven and her husband Bill have organized a fundraiser walk at Pond Meadow Park in Braintree this Saturday, Sept. 22.

Slaven moved to the United States after meeting Bill in Germany, where he was stationed during the Vietnam War. They married and had two sons. She was a bilingual interpreter for companies like Honeywell and Bausch and Lomb before raising a family in Weymouth.

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Then, in 1986, Slaven noticed herself becoming increasingly fatigued. At first she pegged it to the normal effects of aging, but was eventually diagnosed with Lupus, a chronic inflammatory disease. Three years later a muscle biopsy showed that it was a form of Myositis that could be treated with certain medication.

More than a decade after her initial diagnosis, after experiencing unexplained falls and an absence of knee reflexes, Slaven learned that she actually had Inclusion Body Myositis, which does not respond to the immunosuppressive treatments she had been undergoing for years.

"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."

One of the first places she was able to turn to was the Myositis Association of America, founded under a different name in 1993. An original list of 16 member patients grew over the next two decades to 6,000, according to the association. The growth provided more support to Myositis patients like Slaven and also paved the way for additional research funding.

Massachusetts was the first state to recognize Myositis Awareness Day, on Sept. 21, 2001. It has since been designated nationally by the U.S. House of Representatives. The woman who led the effort locally, Janice Goodell, later became of friend of Slaven's. Gooddell was also the first to organize the fundraiser walk, which Slaven helped coordinate before taking over a few years ago.

Since 2007, Slaven has shared details about her ongoing battle with Myositis, including what equipment and therapies work for her, on her website. Thousands of people from all over the world have visited, Slaven said, and she has corresponded with patients from South Africa to Australia.

"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."


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