Although I am a student in a biomedical science program I have only begun in the past two years to educate myself in issues relating to Cystic Fibrosis. When I was growing up I tried to hide from any literature relating to CF in hopes that the disease would feel my neglect and go away. My early years intentionally avoiding learning about the disease may seem immature, but it was my coping mechanism to pretend I was normal so that I could rationalize pursuing my goals despite the realities of living with the disease. However, learning more about CF and the issues that are important to the community has only served to strengthen my health as I learn to better care for myself as well as inspiring me toward my goals as I read from others who also contend with the disease and the accomplishments they have made.
In my reading, I try to educate myself in the following areas; the science underlying the disease, public policy relevant to CF healthcare, programs available to CF patients, and blogs from others who have CF. I want to highlight four sources I have found that have helped me to increase my knowledge within these areas.
The Cystic Fibrosis Life Style Foundation, founded by Brian Callanan in 2003, is one of the most empowering programs that I have found. The CFLF’s philosophy is that an active lifestyle can effectively supplement airway clearance treatments to promote physical and psychological health in those living with CF. The website tells the story of the program and how Callanan initially raised $150,000, and $60,000 of that was generated through a 2,000 mile awareness bicycle ride Callanan took in 2006 from Canada to Key West.
The CFLF promotes an ongoing healthy lifestyle by providing Recreation Grants for anyone with CF with an option to add a second person as a form of support. Grants are awarded up to $500 and those who apply are encouraged to propose a continual activity as opposed to a one time thing. A list of the types of activities that are funded include rock climbing lessons, gym memberships, sports camp, marathon fees etc.
Blogs serve an important role to give a small glimpse into the experience that characterizes a life with CF and it provides a way for those living with the disease to find connection and inspiration with others who understand a bit of their own experience. Because of CF there are thoughts and habits that are an ingrained part of my identity that I had never found in other people until I began to read blogs by others with the disease.
The blog written Gunnar Esiason, an English major and graduate of Boston College, has provided me the greatest connection to my own experience living with CF. Gunnar often finds a gentle balance in sharing his experience in a way that is both poignant and light-hearted. Gunnar has lived a productive and full life and provides wonderful insight through his experiences as a college student, an athlete and a coach.
One of the most inspirational projects I have come across in the past few months is a book that will be released by portrait and fashion photographer, Ian Pettigrew. The book is to bring light to the changing demographic of CF with an ever growing population of adults, which continues to increase due to increasingly effective therapies and lung transplantations. As the adult population grows there are a unique set of challenges they are presented as they contend with depression, marriage, beginning a family, self image, in addition to many others.
Through the book, Ian Pettigrew strays from a traditional model of fundraising to provide a beautiful collection of portraits of adults with CF paired with a piece they have written about their unique experience with the disease. I would encourage each person to order a book in support of beauty and continued awareness in the fight against CF.
One of the greatest sources of information for me has unsurprisingly come from the Cystic Fibrosis Foundation website. The website is brimmed with information from all aspects including life-style, health care, news, policy and drug development. I want to highlight just a two of the many areas within the website I regularly peruse.
Almost every other day I check the news section to learn what advances or press releases have been made through the Foundation. This information can be found under the “News and Events” section on the homepage of the website. A second portion of the webpage I often visit is under the “Research Overview” tab found on the home page which includes a link to the drug development pipeline. This is a quick easy way to reference the therapies that are being developed and the progress they have made through the clinical phases of development. I can not encourage someone enough to spend time looking through the website to learn more about the areas most critical to those in the CF community.