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.
Cystic Fibrosis Canada recently added a comprehensive guide to CF genetics, physiology, symptoms and treatments to their web site. Here is the press release:
Cystic Fibrosis Canada announces launch of free cystic fibrosis e-learning module
September 12, 2017 (Toronto) – It’s back to school season and thanks to a new educational resource from St. Michael’s Hospital, anyone can now easily upgrade their knowledge of cystic fibrosis (CF) to better help their patients, clients or loved ones.
The CF e-learning module contains a multitude of information that provides a comprehensive overview of CF to better equip people with the tools they need to understand this complex disease. The interactive format allows users to learn at their own speed and is great for professional or personal purposes.
The e-learning module was developed by Dr. Anju Anand and Dr. Melanie Chin from the CF clinic at St. Michael’s Hospital in Toronto in response to a need for better CF teaching resources. Cystic Fibrosis Canada is grateful for this undertaking and hopes that it is widely used by those affected by CF as we work together to care, treat and find a cure for Canadians living with CF.
You can access the Cystic Fibrosis eLearning Module by clicking this link. We have also added this link to our Information Resources, About Cystic Fibrosis page.
The module is presented in a slide show format. You can review all of the pages using "Next" and "Previous" buttons or you can select specific sections/pages using links in the menu displayed in the left margin. Some of the pages act as menus to a variety of related topics. In other cases, the text includes "i" buttons that access more detailed information in pop-up frames.
As stated in the press release, the e-learning module is useful for both medical professionals and others in the CF community without medical training. If you are inspired to learn more about particular topics presented in the module some pages include links to in depth information on other sites. We think you will find this to be a useful resource to expand or refresh your knowledge of CF as well as an aid in explaining CF to family and friends.