Magazine article The Exceptional Parent

International Foundation for Chronic Disabilities

Magazine article The Exceptional Parent

International Foundation for Chronic Disabilities

Article excerpt

Dr. Philip May, assistant medical director at the Hunterdon Development Center in Clinton, N.J., and his colleagues, kept noticing that bone fractures were all too common among the residents with cognitive disabilities. Was it from abuse? Neglect?

With the nursing department searching for answers, in 2006 the facility purchased a bone density machine, and Dr. May was asked to operate it. Coincidentally, he and Dr. Sunil Wimalawansa, a world-class researcher and director of the osteoporosis program at the University of Medicine and Dentistry of New Jersey/Robert Wood Johnson Medical School, were already collaborating on ways to manage the complex medical problems faced by many adults with developmental disabilities. They initially tossed around the idea of creating a center at the medical school, but ultimately decided to establish a Foundation to address the health challenges of people with the "complications" of chronic brain disorders: cognitive and motor dysfunction, seizures, and destructive behavioral problems. The International Foundation for Chronic Disabilities (IFCD) was launched in 2008.

"The IFCD is the only organization that promotes the concept of 'chronic brain disorders,'" says Dr. May, who serves as the group's secretary/treasurer. (Dr. Wimalawansa is chairman of the board.) CBDs fall into three major categories, he notes: those that surface in childhood, such as developmental disabilities; those that begin in young adulthood, such as traumatic brain injury; and those that are aging-related, such as Alzheimer's disease and stroke.

Regardless of age of onset, people with CBDs often share similar problems, from osteoporosis and gastrointestinal disturbances to recurring pneumonia and the side effects of overmedication. They have something else in common too: They're frequently treated by multiple specialists who have no idea what the other specialists are doing. "For a single patient, there may be a neurologist for seizures, a psychiatrist for behavior, a gastroenterologist for GERD, and an endocrinologist for osteoporosis," says Dr. May. "Specialists tend to focus on offering treatments in their specific area. This may conflict with treatments prescribed by other specialists. For example, a psychotropic drug prescribed by a psychiatrist may worsen seizures, while an anti-seizure drug prescribed by a neurologist may worsen behavior. Both types of drugs may worsen osteoporosis, and create gastrointestinal problems."

What's more, medical professionals are often unprepared to address complex chronic conditions and, under the current healthcare system, primarily react to acute problems that can be "cured. …

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