Worthwhile Experiences at BreatheCon, a Virtual CF Conference
(Courtesy of CF Foundation)
BreatheCon is a free online conference hosted by the Cystic Fibrosis Foundation (CFF) for CF patients 18 or older from across the globe to share life experiences, ideas, and encouragement.
I have attended this incredible annual event since its inception in 2016. It has been uplifting to hear from keynote speakers who have faced tremendous adversities and left the battles stronger and more motivated than before. In breakout sessions, I’ve had genuine and inspiring conversations with individuals who have different, valuable perspectives.
BreatheCon inspires the hope and courage I’ll need for my toughest challenges to come.
This year I have had the joy of helping to plan for BreatheCon. In this column, I share the top five things I now better understand about living with cystic fibrosis because of the convention.
Ask questions and share your knowledge of Cystic Fibrosis in our forums.
Self-advocacy is imperative
Every CF adult knows his or her own body better than anyone else, including CF doctors. Doctors’ advice and recommendations are essential to maintaining your health, as they are the experts in medicine. However, making decisions about your health with your doctor helps them to create a balance between health optimization, happiness, and fulfillment. Your thoughts also help them form an idea of how certain treatment strategies work for different patients.
CF has psychological effects
CF is a physical disease, but many of our trials demand psychological tolls. Some people struggle with reaching fulfillment and an overall acceptance of life with this disease.
Many CF patients have had transplants and are thriving
I have been surprised and joyful to see so many patients in attendance at CF MiniCon: Transplant who received double-lung transplants and continue to maintain their health so smoothly. Hearing their testimonies gave me much hope for my future and for other CF patients who face a transplant.Â
Comfort levels vary in CF interactions
Many people abide strictly to CFF guidelines on infection control by never initiating in-person contact with another CF patient. Others don’t. Either way, everyone I’ve met with CF wants to interact with other patients in some way. Connect with me through Facebook or Instagram!
Although we have CF, we are all normal
CF is just one part of who we are. It’s the part of us that requires a few hours a day of wearing a vest and doing nebulizer treatments while we surf the internet or write awareness pieces. It’s the part of us we tell acquaintances about when they ask why we cough so much. The other parts of us — the activities we enjoy, our personality traits, our relationships with others — are just like everyone else’s on this planet.
Thank you, CFF, for assembling a program that brings the CF community together! Join me on Sept. 28 and 29 for this amazing event. Register here today.
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Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today, or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.
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Danna Merritt
This is amazing, and having just come across it, I am interested in talking more with you about it. Yes. There is much much more to living with an inherited, life-threatening medical condition than just medical interventions. Life goes on and parents and patients need support, networking, and availability of services! Raising a child with cf or Hemophilia is a real challenge considering the emotional issues parents face following diagnosis, such as grief, fear, guilt, and more. These feelings have a tremendous impact on parenting their affected child, but with education, insight building, they can overcome some of these issues, and raise their children to become independent, confident, productive when they reach adulthood. While Social Worker then Executive Director of the Detroit Metropolitan Area CF chapter between 1984-1987, I developed a heart for those living with CF. As such, I developed a 2 day psychosocial intervention for parents of children living with cf with advice from the parents: the parents themselves! We held two programs, both of which resulted in positive outcome for the parents who attended. When I went on to be the social worker at the Hemophilia Treatment Center at Children's Hospital of Michigan, I took this cf parenting program template with me. In 1995-96 I was finally able to write a similar program for parents raising children with hemophilia. That program is an outcomes based program which is now global. (See PEP study results at: Parents Empowering Parents (PEP) Program: Understanding Its Impact on the Bleeding Disorder Community - www.ncbi.nlm.nih.gov/pubmed/21435114).
It's name is Parents Empowering Parents (PEP). I am hoping you have some time to schedule an opportunity to talk with you about making this program available in the cf community as well. Thank You so much! I can see you are doing a great service for those living with cf!!!!! Keep up the good work!