Until that day comes, we have an obligation to improve quality of life by reducing the impact of living with IBD. Glasgow talked about some of the challenges that a person suffering from IBD faces, including general lack of awareness of the disease, late diagnoses, poor access to IBD specialists and clinics, and lack of insurance coverage for expensive yet critical medications. Employment issues are very common, with 21,000 people with IBD unable to work every year, and over 40 per cent of people taking short-term leaves, he said. Even those in remission suffer from fear and anxiety in anticipation of a future relapse. Panellist Ruth Scully, a volunteer with CCFC, has two children with IBD. As a mother, it is so difficult to watch my kids in pain. I wish I could take it all away from them, she said. Her son requires more than $40,000 worth of medications per year to manage his disease. She worries that soon he will not be covered by the family insurance policy and that paying for the drugs will be a burden for him for the rest of his life. My strategy to cope with the IBD in my family is to do anything I can to help. I volunteer, raise money and speak to other parents whose children have been diagnosed, she said. Its a common disease, but people arent talking about it. Each year, the Scully family participates in the CCFCs Gutsy Walk, to raise money for IBD research. Her children have raised more than $100,000 in pledges since they began participating.
helpful hints http://www.cjnews.com/index.php?q=node/96568
Attended Lecture With One Of Canada’s Foremost celiac disease Gastroenterologists
Advanced Members 3,526 posts Posted 02 June 2011 – 09:33 AM For some reason I posted this under “Post Diagnosis” so I thought I should add it here in case anyone is interested. http://www.celiac.co…gist-yesterday/ 0 Confirmed celiac disease February 2011 from biopsies (had both gastroscopy and colonoscopy). Strictly gluten free March 18 2011. Diagnosed with fibromyalgia April 13 2011. 3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries – from an accident Dec. 07 – resulting in chronic pain ever since. Degenerative disc disease. Osteoarthritis in back and hips. Chronic insomnia mostly due to chronic pain. Aspartame free May 2011. Dairy free August 15 2011. Can tolerate aged cheese Jan.