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The same head, torso and lateral fractures reported in children with terminally ill Addison’s disease are being found to be lethal elsewhere in the world.
Each year, more than 4,000 children under 5 die worldwide of a rare genetic disease that damages their brain and organs and leaves them in a potentially fatal coma or vegetative state for a time.
Although the disease is non-euphoric, symptoms are virtually identical — depressed limb movement, fuzzy vision and headaches. Most children with Addison’s survive.
But it’s unclear whether diagnoses are being made for children around the world. A new study found that while the amount of progress made in treating children with Addison’s disease worldwide had doubled over the past decade, many more children could die.
Researchers from the University of Alberta in Canada surveyed school libraries and community centers in British Columbia, Australia, Japan, Norway, Hong Kong, Belgium, Norway, Ireland, South Africa, Sweden, Spain, Singapore, The Netherlands, and the United States to collect genetic data for the disease, which causes brain damage and motor and cognitive problems.
Their findings suggest that while some children diagnosed with Addison’s do show significant progress worldwide, other children don’t. What’s more, children who do show improvement can ultimately progress rapidly, and there’s an alarming number of cases of them with this disease in the U.S.
The team, which also included researchers from Columbia University, interviewed doctors, therapists, patients and their families in 37 cities to find out where children with the disease were diagnosed and how they were treated.
The researchers analyzed the journal Infectious Diseases Society of America database of only 4,100 cases from 1998 to 2011, and found that globally, cases of children with the disease increased from about 2,100 to 3,900 over a decade.
Read the full story at the Arizona Republic.
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