After a difficult selection process where many interesting abstracts coming from all over the World have been evaluated, we are delighted to present you the Rising Stars of 1st Adult Cystic Fibrosis International Workshop.
The Rising Stars will have the opportunity to present their valuable work for the first time in front of an International audience, receiving the kind advise of the Chairmen.
Swedish Cystic Fibrosis Association
Survivors Against All Odds
The aim of the project is to find out how people with CF, having survived to 40 years of age, have coped as the disease changes with age and new diagnoses and complications emerge. The struggle against the disease needs attention and there is a need to secure quality of life for the future.
We asked people with CF over 40 years of age to write their personal story to be able to understand the general from the personal. Ten real life stories of three to ten pages have been sent to the project. The stories bear witness of strength and thankfulness to life but also concerns for the future, how the symptoms of CF will develop, personal economy, sequelae like diabetes and cancer as well as growing old with CF in general.
Dr. ULRIKA Skogeland
Stockholm CF Centre, RN, Transplantation/palliative care
Adherence to medical regimens after lung transplantation increased using motivational interviewing and questionnaires
Twenty lung transplanted CF patients were followed for five years using principles from Motivational Interviewing (MI) together with a standardized questionnaire (BAASIS, TAQ and IMAB). Adherence of the patients was defined as taking, timing within two hours of prescribed time and dosage. Mean adherence of the patients was 40% at baseline and rose to between 50% and 100%. Adherence can be increased through MI, a person-centered approach designed to activate motivation for change, i.e. in this case to become more adherent to anti-rejection therapy.
Dr. Bat El Bar Aluma
Clinical Expression of Cystic Fibrosis patients carrying the I1234V mutation
The I1234V mutation is considered quite rare with only 28 patients described in the CFTR2 database. However according to the WHO this CF mutation is the second most frequent mutation in middle east countries. The mutation produces alternative splicing with a CFTR protein lacking 6 amino-acids. The primary aim of our study was to characterize phenotypically individuals with the I1234V variant and compare to patients homozygous for 508del . We described 9 patients carrying the mutation( 4/9 homozygous). Interestingly ,Patients presents with high levels of sweat chloride similar to patients homozygous for 508del, however all Pancreatic Sufficient in the first decade of life, and present with milder phenotype.