In the fall of 2017, I was asked to join the Advanced Lung Disease Guidelines Committee as a parent representative because of my work as a member of Community Voice. I was honored and said, “Yes!” I am so pleased I did, because my experience gave me great hope and valuable insight into the dedication that goes into improving cystic fibrosis care.
Site Search
As co-chair of ResearchCon, I had the opportunity to work with other members of the cystic fibrosis community to help set the agenda for a virtual research conference on CF infections. The event left me in awe of the scientists and the work being done around the world to fight this disease.
As an individual with cystic fibrosis, I can give you all kinds of examples of how providers shouldn't treat their patients. However, it was my experience as a fictional patient that taught me how to be a better CF patient.
When the news of the Trikafta™ approval came out, I was simultaneously excited for people with CF that would benefit and disappointed that another new medicine is passing me by. But, hearing about the next wave of research into a cure for ALL people with CF has me looking forward to the future.
Effective communication is the best way to establish a partnership in care. Here are five things I hope to share with my cystic fibrosis care team to help them better understand where I'm coming from and what I need to stay healthy.
When I first learned that my two sons had cystic fibrosis nearly 20 years ago, I barely understood the disease, let alone how to fight back. After contacting the Foundation, I learned just how easy it was to make my voice heard through volunteering.
With another fantastic Volunteer Leadership Conference (VLC) in the books, I want to share some of the things we learned and how we can keep the momentum going through National Volunteer Week, and all year long.
For people with cystic fibrosis, our story is the most powerful tool we have to stand up for ourselves and fight for our needs. Although I can't always be there to share my story with legislators in person, I'll be joining many others from the CF community for our first March on the Hill Online Day of Action to make my voice heard.
For months, I was too scared to tell anyone that my new inhaled antibiotic wasn't working for me. But after opening up about it with my CF care team, I learned that being honest is the most important thing I can do when it comes to maintaining my daily care.
A lot is said during clinic visits. Here's just a few examples of what we've heard that show the range of relationships people with CF have with members of their CF care teams.