cystic fibrosis / la fibrose kystique

CYSTIC FIBROSIS / LA
FIBROSE KYSTIQUE
Kaitlin Atkinson Family Resource Library / Bibliothèque de
ressources familiales Kaitlin Atkinson
Resource List / Ressources
@CHEOfrl
@CHEOhospital
Alex: the life of a child / Deford, Frank. -- Nashville, TN: Rutledge Hill Press, 1997.
Alexandra Deford, a precious and precocious girl, was just eight years old when she died in 1980
following a battle against cystic fibrosis. Her poignant and uplifting story touched the hearts of
millions when it was first published and then made into a memorable television movie. A new
introduction contains information on the latest cystic fibrosis research, and a touching postscript
reveals how the Deford family came to terms with the loss of Alex.
FAM RJ 456 .C9 D43 1997
CF and you: a guide for adolescents -- Ottawa, ON: Carleton UP, 1996.
This book offers sensible advice on dealing with CF clinic staff, coping with school physiotherapy,
and discussing CF with friends and family. In response to concerns voiced by adolescents with
CF, this revised edition tackles issues such as sexuality and personal relationships unique to
people with CF. Also included is a section dealing with the transition to adult CF clinic care.
FAM RJ 456 .C9 C24 1996
Comprendre la fibrose kystique: un guide d'enseignement -- Markham, ON: Solvay Pharma
FAM RJ 456 .C9 U514
Cystic Fibrosis / Abramovitz, Melissa -- San Diego: Lucent Books, 2003.
Explores the history, symptoms, diagnosis, and treatment of cystic fibrosis, reviews ongoing
research, and discusses how to live with the incurable genetic disease that is often called "65
Roses”.
FAM RJ 456 .C9 A274 2003
Cystic fibrosis: the ultimate teen guide / Apel, Melanie Ann -- Lanham, MD: The Scarecrow Press, Inc.
2006.
This book is based on interviews with people living with CF and their family members, which
covers all aspects of the disease such as the day-to-day dealings with the illness, diagnoses
procedures, daily therapies, and stories of CF patients now in their 30's and 40's.
FAM RJ 456 .C9 A74 2006
Little brave ones: for children who battle cystic fibrosis / Lux, Carrie -- Charleston, SC: Booksurge,
2005.
This picture book tells the story of one day in the life of a little girl fighting Cystic Fibrosis. It was
written in order to help these small but mighty few find a sense of commonality and see fun photos
of other kids who are just like themselves.
FAM RJ 456 .C9 L79 2005
Living with Cystic Fibrosis / Gray, Susan H. -- Chanhassen, MN: The Child's World, 2002.
Introduces readers to the disease of cystic fibrosis, its causes, how it affects the body, and what
it's like to live with the disease.
FAM RJ 456 .C9 G73 2002
Mallory's 65 roses / Smith, Diane Shader -- 1997.
This is an engaging story of Mallory, a creative and energetic little girl afflicted with cystic fibrosis
(CF), an inherited lung disease. She explains her condition and its ramifications in her own words,
painting a picture accessible to children and poignant to adults.
FAM RJ 456 .C9 S64
Miguel and Sarah: close friends and cystic fibrosis / Dowell, Andrea C. -- Minneapolis, MN: Children's
Hospitals and Clinics - Minneapolis, 1999.
CHEO – Bibliothèque Kaitlin Atkinson Library
Cystic Fibrosis / La fibrose kystique
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Miguel explains what he has learned about Cystic Fibrosis from his friend Sarah, who has the
disease.
FAM RJ 456 .C9 D68
The official parent's sourcebook on cystic fibrosis -- San Diego, CA: ICON Health Publications, 2004.
This reference manual shows parents where and how to look for information covering virtually
all topics related to cystic fibrosis.
FAM RJ 456 .C9 O3 2004
Parenting children with health issues: essential tools, tips, and tactics for raising kids with chronic
illness, medical conditions and special healthcare needs / Cline, Foster --Golden, CO: Love &
Logic Press, 2007.
Offers parents of children with chronic health issues practical strategies and suggestions to help
them cope with their child's condition and the constant physical and emotional challenges they
face.
FAM RJ 380 .C62 2007
Taking Cystic Fibrosis to school / Henry, Cynthia S. -- Valley Park, MO: Jayjo books, 2000.
Designed to help kids better understand their classmates with cystic fibrosis, this brightly illustrated
picture book also educates families, teachers, school nurses, parents, and caregivers. Appropriate
for ages: 5-10 years.
FAM RJ 456 .C9 H46
Understanding cystic fibrosis / Hopkin, Karen. -- Jackson: University Press of Mississippi, 1998.
Understanding Cystic Fibrosis charts the progress that has been made in identifying the mutations
that cause CF and in understanding how these genetic errors cause a disease whose symptoms
can range from mild respiratory distress to life-threatening lung infections.
FAM RJ 456 .C9 H56 1998
Web Sites / Sites internet
Cystic Fibrosis (CF) – About Kids Health / Fibrose Kystique (mucoviscidose)
http://www.aboutkidshealth.ca/en/healthaz/conditionsanddiseases/geneticdisorders/pages/cystic-fibrosiscf.aspx
Cystic Fibrosis Canada / Fibrose kystique Canada
http://www.cysticfibrosis.ca/en/index.php
Fibrose kystique Québec / Cystic Fibrosis Quebec
http://www.fibrosekystiquequebec.com/fr/
Cystic Fibrosis – MedlinePlus from the US National Library of Medicine
http://www.nlm.nih.gov/medlineplus/cysticfibrosis.html
What is Cystic Fibrosis? NIH - National Heart, Lung and Blood Institute
http://www.nhlbi.nih.gov/health/health-topics/topics/cf/
Kids Health - Information for Parents, Teens and Kids from the Nemours Foundation
www.kidshealth.org
Cystic Fibrosis Foundation
CHEO – Bibliothèque Kaitlin Atkinson Library
Cystic Fibrosis / La fibrose kystique
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http://www.cff.org/
Cystic Fibrosis and Your Baby – March of Dimes
http://www.marchofdimes.com/baby/cystic-fibrosis-and-your-baby.aspx
Cystic Fibrosis – Webicina
http://www.webicina.com/cystic-fibrosis/
Apps
CF MedCare
● M-Data SA
● English, German, Dutch, French and Italian / anglais, allemand, néerlandais, français et italien
● Free / gratuit
● Last updated Dec 2015 / Mis-à-jour 2015 décembre
● Many CF patients have a complex and time consuming regimen, which can lead to non-compliance.
While the reasons for non-compliance are complex, simple forgetfulness has been cited as the most
common cause for missed treatment. Offered as a supportive tool, CF MedCare: Allows users to create
their own treatment profile (or multiple profiles for family members and care takers) adding all their
medications, schedules and instructions; Alerts; Captures the user’s compliance; Provides the ability to
share the data; Reminds users when it’s time to renew their medication(s); Creates monthly compliance
records. / Beaucoup de patients atteints de mucoviscidose ont un régime complexe et chronophage, qui
peut conduire à la non-conformité. Bien que les raisons de la non-conformité sont complexes, simple oubli
a été cité comme la cause la plus commune pour le traitement manquer. Proposé comme un outil de
soutien, MedCare CF: Permet aux utilisateurs de créer leur propre profil de traitement (ou plusieurs profils
pour les membres de la famille et des preneurs de soins) en ajoutant tous leurs médicaments, les horaires
et les instructions; Alertes; Capture le respect des utilisateurs; Offre la possibilité de partager les données;
Rappelle aux utilisateurs quand il est temps de renouveler leurs médicaments (s); Crée les dossiers de
conformité. L'application MedCare CF envoie des rappels pour prendre le bon médicament, au bon
moment, avec les instructions qui ont été saisies (i.e. Prenez avec le dîner), même si l'utilisateur est
déconnecté.
● Available from / Disponible depuis iTunes
Local Contacts / Liaison régionales
Cystic Fibrosis Clinic - CHEO / Clinique de fibrose kystique – CHEO
401 Smyth Road
Ottawa, ON K1H 8L1
Fax: 613-738-4865
Nurse Coordinator: 613-737-7600 ext. 2214
Physician referral is required with confirmed diagnosis of cystic fibrosis / Une demande de service par un
médecin est nécessaire avec un diagnostic confirmé de fibrose kystique.
Cystic Fibrosis Canada
Regional Office
308 Palladium Drive, Suite 106
Kanata, Ontario K2V 1A1
613-482-7912
http://www.cfottawa.ca/
CHEO – Bibliothèque Kaitlin Atkinson Library
Cystic Fibrosis / La fibrose kystique
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This guide provides medical material for information purposes only and is not intended to replace
the advice of your physician. The information may not always apply to your individual situation.
The guide represents material available in the Family Resource Library collection at CHEO. It is not
intended to be an exhaustive list. Your local public library may also be able to provide you with
information.
If you require materials in alternative formats, please contact the library at 613-737-7600 ext. 2157
or at [email protected].
Ce guide fournit du matériel médical pour informations seulement et ne vise pas à remplacer les
conseils du médecin. Ces informations pourraient ne pas toujours s'appliquer aux situations
individuelles.
Ce guide présente le matériel disponible à la bibliothèque de ressources familiales du CHEO. Ce
n'est pas une liste complète. Votre bibliothèque publique locale pourrait aussi être en mesure de
vous fournir des informations précieuses.
Si vous avez besoin des documents en formats alternatifs, s’il vous plaît contacter la bibliothèque au
613-737-7600 poste 2157 ou à [email protected].
.
Last Updated: Jan 2016
Links Tested: Jan 2016
CHEO – Bibliothèque Kaitlin Atkinson Library
Cystic Fibrosis / La fibrose kystique
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