Cystic Fibrosis Australia has produced a wide range of brochures covering all aspects of life with CF. While some of the material is specific to Australia, the majority of the information is relevant to anyone living with CF or wanting to know more about CF.
You can find these resources at Facts, Figures and Publications. We have also added a link to our Information Resources, Life with CF section.
The brochures are arranged in the following categories:
Carrier Screening and diagnosis
Medications and procedures
Comorbidities (continence, bone health and CFRD)
Sexual Health and Fertility
Climate Change and CF
Exercise and Sport
Each topic provides links to PDF brochures dealing with various aspects of that topic. For example, the Carrier Screening and Diagnosis section includes brochures entitled: "New Diagnosis Information for Parents," "Carrier Screening" and "Sweat Test."
The brochures are written in an easy-to-read style. Breaking the information into multiple sections not only helps you deal with information overload, but also makes it easier to focus on the topic of most interest to you.
While cystic fibrosis presents many unique challenges, people living with CF share experiences with individuals dealing with other chronic illnesses. Online MSW Programs produced a comprehensive list of resources to provide relevant information to cope with the demands associated with chronic illness. You can find these useful resources at:
This link has been added to our Information Resources section on the Life with CF page.
As stated at the opening of this link: "Receiving a diagnosis of a chronic illness can upend the lives of patients and their families. Everything from daily routines to family dynamics must shift to accommodate a new normal brought on by the illness. Access to the right resources can make facing this challenge a little easier for families and caregivers."
The resources compiled by Online MSW Programs cover all aspects of the support system for the chronically ill. Their links are divided into the following categories:
Family Members with Chronic Illness
Adults with a Chronically Ill Parent
Children with a Chronically Ill Parent
Parents and Caretakers with a Chronically Ill Child
Siblings of a Chronically Ill Child
Grandparents with a Chronically Ill Grandchild
Partners of a Chronically Ill Spouse
Social Workers and Other Care Providers
Community Organizations and Employers
Educators and Schools
The Online MSW Program's article also includes a section entitled "How Can Social Workers Support Families Affected by a Chronic Illness?" This section offers suggestions in psychosocial assessments, care coordination, supportive counseling and connection to resources. While these topics are geared to social workers, the contents may help CF patients and families initiate conversations with their care teams.
We have added a new page to the Our Lung Transplant Story section of the site. A Daughter's Perspective presents an essay written by the daughter of the transplant recipient. Her story is loving and encouraging.
Here's a tease to encourage you to read her essay: "I give him so much credit for not giving up and for being persistent to get better for my family and so that my sister, brothers and I could have a father who loves us and who would be there for us until it's really his time to go."
Cystic Fibrosis Ireland has published a guide intended to help parents educate teachers and others about CF and the implications for the school environment. While certain information is relevant only to the school system in Ireland, the majority of the document can be helpful in any situation.
The guide is a PDF document that can be viewed or saved at this link: School and CF (Ireland) The guide has also been added to our Information Resources, Life with CF page under the "Education" heading.
The Breathe for Bea Foundation recently opened their cystic fibrosis scholarship program to people living with CF regardless of their state of residence. The foundation also offers other financial assistance regardless of residence. Here are a couple of quotes from the Breathe for Bea Foundation web site:
The mission of the Breathe for Bea Foundation is to help individuals with Cystic Fibrosis, as well as families who have a loved one with CF to care for, fight this disease by providing financial aid to help alleviate the burden of medical costs that come with treating CF, scholarships to help those with CF achieve their dreams of a higher education, hospital care packages, lung transplant aid, and through other efforts. By providing this assistance, it is our hope that we can lessen some of the stresses that can go along with living, and caring for someone, with Cystic Fibrosis.
The Breathe for Bea Scholarship Program was launched by the Foundation in 2018 in memory of our cherished Ashley “Bea” Briggs who passed away in early 2017 at the age of 29, after a courageous fight against complications brought upon by Cystic Fibrosis. Ashley never let CF stop her from pursuing her dreams and, after graduating from Sacred Heart High School in Kingston, Massachusetts, she went on to pursue and obtain a bachelor’s degree from Johnson and Wales University in Providence, Rhode Island. It is her spirit and determination that has driven the Breathe for Bea Foundation to establish this scholarship program, as we want to help others who are living with Cystic Fibrosis achieve their dreams of a higher education too.
Links to the Breathe for Bea Foundation programs have been added to our Information Resources, Financial Assistance and Scholarships pages.
Cystic Fibrosis Trust, an organization similar to Cystic Fibrosis Foundation that serves the United Kingdom, recently published three booklets that provide information on the various aspects of transplant. Although lung transplantation is the major focus, the booklets also touch on liver and other organ transplants.
Each booklet is targeted to a specific segment of the CF community:
For adults living with CF: Cystic fibrosis and transplant booklet 2018
For partners and family members: Transplant information for partners and families 2018
For parents of children with CF: Transplant information for parents 2018
The links will open the booklets in your default PDF reader. [If you need a reader, you can get a free copy of Adobe's reader at: https://acrobat.adobe.com/us/en/acrobat/pdf-reader.html] Once open in your reader, you can save or print your own copy.
These booklets have also been added to our Information Resources, Medical Care page under the Transplant heading.
The Boston CF Center and Center for Young Women's Health at Boston Children's Hospital has produced a series of health guides written specifically for adolescent and young adult women. According to the release announcement, "this 12-guide series was developed in partnership with patients, parents, members of the multidisciplinary CF team, and adolescent medicine specialists." The guides are available at https://youngwomenshealth.org/cystic-fibrosis-all-guides/.
The guides cover the following topics:
Cystic Fibrosis (CF)-general
Cystic Fibrosis: Puberty and Menstrual Periods
Cystic Fibrosis: What Should I Know About Sex?
Cystic Fibrosis: Vaginal Yeast Infections
Cystic Fibrosis: Talking with Your CF Team about Sexual and Reproductive Health
Cystic Fibrosis: Talking with Your Partner about CF and Sexual and Reproductive Health
Cystic Fibrosis: Contraception
Cystic Fibrosis: Urinary Incontinence
Cystic Fibrosis: Sexually Transmitted Infections (STIs)
Cystic Fibrosis: Pregnancy and Fertility Basics
Cystic Fibrosis: Deciding Whether to Become a Parent
Cystic Fibrosis: Pregnancy and CF
A link to the guides has been added to our Information Resources, Medical Care page under the Medical Issues heading.
The Journal of Cystic Fibrosis has published an article that provides detailed background on the science of gene editing and stem cells specifically relating to CF. One section of the article deals with the associated legal and ethical issues. Since the article is geared to readers in the scientific and medical communities, some may find the article difficult reading.
You can find this article at: http://www.cysticfibrosisjournal.com/article/S1569-1993(17)30975-X/fulltext
We have added this link to our Information Resources, Medical Care page.
CFF recently issued the following announcement:
Happy New Year!
We are pleased to announce a new resource that is available to you. “CF and Mental Health: Building Resilience - A Guide for Parents and Caregivers”, is now live on cff.org! It is on three of our web pages in the downloads section:
Coping While Caring for Someone with CF
Anxiety & CF
Depression & CF
This resource was written by Shaina Blair, MSW, LCSW, and Carolyn Snell, PhD, and approved by the CF Foundation Education Committee and Mental Health Advisory Committee. It will also be available in the resources section of PortCF and in the Mental Health Dropbox.
Links to these resources have been added to our Information Resources, Medical Care page. We have also included two PDF guides for caregivers concerning mental health.
Understanding the mutation that produces your particular version of CF is more than scientific curiosity; it holds the key to the progression of the disease and the treatments that may change the course of that progression.
The Cystic Fibrosis Foundation (CFF) provides many information resources to promote knowledge on the cystic fibrosis transmembrane conductance regulator (CFTR) mutation. Their latest entry into the library is a two-sided single sheet flyer that gives an excellent snapshot of the four classes of mutation, their physiology and the emerging treatments designed to correct these defects. Check out Know-Your-CFTR-Mutations.
The above link will give you the option to open or download the flyer. The document is a good starting point for familiarizing yourself with the science that describes CF, and educating family and friends. For future reference, the flyer has been added to our Information Resources, About Cystic Fobrosis page.