David and Christine were doing mission work in Ukraine when David began experiencing issues with balance and fatigue. “But these were general, non-specific symptoms and no one got alarmed,” Christine recalls. Until his symptoms suddenly became more severe. On a trip to Poland, David saw a neurologist who diagnosed him with two brain tumors. “We were shocked and scared,” she says. The Hartville, Ohio-based couple was evacuated back to the States.
An MRI determined that there were no tumors, but that David had suffered two strokes. “Then the neurologist said the scan was ‘funky’ – he actually used that word,” she says. “But they never did anything. They just released him. It was terrifying. You know something’s wrong, but don’t know what.”
Just two weeks later, David developed a new symptom — not being able to do things in sequential order. More tests. While they were waiting for results, David had another stroke and was transferred to the Cleveland Clinic. “There was no reason why a 44-year-old man would have had three strokes in about two months,” Christine explains. “He was tested for everything from sarcoidosis to AIDS to central nervous systems vasculitis. When he was diagnosed, we had never even heard of any form of vasculitis, much less CNS. But then all symptoms began to make sense.”
Now David is being treated by a neurologist and a rheumatologist, and is in physical therapy to regain strength and movement. He uses a walker and his speech is slurred, but he has had no more strokes, no more strokes. “We’re still learning how to live with the effects of the disease,” she says.
Their experience has turned them into tireless advocates for early diagnosis and increased awareness. “Right now, by the time it’s diagnosed, people have already suffered traumatic effects. We all know stroke symptoms, but nobody knows about vasculitis,” Christine laments. “We’ve got to get the word out that this disease exists and it’s devastating.”
They know the key to early diagnosis is raising awareness among healthcare professionals. “We’re trying to educate every physician, nurse, dentist — anyone who has to do with David’s care. Who knows? If they know symptoms, they could encourage someone to see their doctors. We consider that our responsibility — to educate those who don’t know.”
In a way, they’re now missionaries of a different sort. “It’s horrible to be diagnosed, but if it can help someone else get diagnosed or be of help to anybody, we will go with that. You can’t just live with devastation,” Christine notes, “you have to turn it into something that’s good for yourself and those around you.
“It’s not going to stop our life,” she continues. “We’re going to live the best we can for as long as we can. It’s not stopping us from doing anything. We’re going to kick it, somehow or at least give it a run for money.”
Published: May 2011
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