Although it is not yet known whether Shwachman patients who get leukemia are similar to previously-healthy leukemia patients, with new cellular and genetic markers to identify impending AML, doctors could treat patients sooner, perhaps with a bone marrow transplant. The 25 patients seen at Sick Kids over 22 years are the largest group of Shwachman's patients at one hospital in the world. The first symptoms are often poor growth and inability to digest food. Even though a person can usually digest food with only two per cent of the pancreas working, clinical studies show the exocrine pancreas doesn't work in children with Shwachman's syndrome. Under those circumstances, children need to take pills which contain digestive enzymes with every single meal.
Researchers do know that improvement seems to follow in families.
So, if the first born improves, so will the second. Joan Mowery's daughter, who had been off enzymes since puberty, experience a return of symptoms in her late 20s. Frustrated by how little was known about Shwachman's, Mowery started the support group. We're a group of parents with varying backgrounds who feel compelled to do something, if not for our own, for other children. Sick Kid's researchers keep in touch with the support group and other physicians by Email.