The Globe and Mail, April 04, 2011
Stephen James suffers from symptoms that are as extreme as they are rare: food cravings that compel him to take bolt cutters to the kitchen pantry that his parents have locked, or even a screwdriver to a padlocked freezer. His eating compulsion is due to Prader-Willi syndrome, which is caused by a gene missing on part of chromosome 15. Morbid obesity is one of its biggest medical challenges and many of those with the syndrome – at least 300 in Canada – have diminished muscle tone and decreased mental capacity; most will not be able to live independently. Orphan medicine – treatment for a life-threatening or chronically debilitating rare condition – cost the James’s private health insurer $50,000 annually, while treatments for other diseases can cost up to $1-million a year. To read the full article, click here