Facts

3 Things the Chronically Ill Wish Their Loved Ones Knew

Posted on February 20, 2015 by admin in Childrens Disability, Facts, Road Blocks, What you don’t know No Comments

1. The grief we feel over the life we’ve lost may re-emerge now and then…indefinitely. One life event that can happen to anyone at any time is to be plagued with a chronic illness. There is indeed a grieving process that goes with any life-long illness. In many ways it is no different than facing other major life losses, such […]

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Pancreatitis & Pancreatic Cancer Awareness Month ~ Please Donate – CLICK HERE

Posted on November 11, 2014 by admin in Facts, Research No Comments

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Thought of the Day! April 2014

Posted on April 16, 2014 by admin in Childrens Disability, Education, Facts, Resources, Road Blocks, What you don’t know No Comments

Hayley is in a great deal of pain each day we are doing the best we can. It is very hard for her to have any type of normal or fun life. No doctor has an answer it’s quite sad and pathetic that the “doctors” so far are in such a comfort zone with their worlds that they are […]

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Quality of Life Improves for Pediatric Patients After Total Pancreatectomy and Islet Autotransplant for Chronic Pancreatitis

Posted on February 22, 2013 by Jenny in Facts, Pancreatectomy with Auto-Islet Transplant, Research No Comments

BACKGROUND & AIMS (See Link…) Total pancreatectomy and islet autotransplant (TP/IAT) have been used to treat patients with painful chronic pancreatitis. Initial studies indicated that most patients experienced significant pain relief, but there were few validated measures of quality of life. We investigated whether health-related quality of life improved among pediatric patients undergoing TP/IAT. METHODS […]

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This is a radio interview done with CBC Radio Edmonton from the Alberta Stollery Children's Hospital May 31st, 2013. The interview was done one month after her 13 hour (TP/IAT) Total Pancreactomy & Auto Islet Transplant. By this time Hayley should have had a lot less pain than she was experiencing but we were remaining optimistic. Hayley had opportunity to do both radio and TV interviews to talk about being the 2nd child in Canada to undergo this type of rare surgery and also bring raise awareness to the wrath of Chronic Pancreatitis and the TP/IAT procedure. Hayley chose not to do any further interviews to support the surgery because she already knew in her heart that the surgery was NOT doing what it was supposed to. The surgery was done with almost no pre-testing. Looking back I am now wondering what did the doctor base his positive comment on? His words were that he was 99.9% sure that the surgery was going to help Hayley's pain considerably and maybe even stop it altogether! Never did he say it could make it worse...

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