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.
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As a medical professional who has cystic fibrosis, I have experienced both sides of pain management and chafed under the new rules for prescribing pain medications brought about by a nationwide opioid crisis. Despite having to add yet another doctor to my long list of providers, a trip to a pain management specialist wasn't as bad as I thought.
Participating in clinical trials can be scary, but the sense of empowerment you get from knowing that you are contributing to a cure outweighs any second thoughts.
Although I wasn't sure that I'd still be thriving and working at the age of 44, I was fortunate enough to have people who encouraged me to plan for the future despite my CF diagnosis. That's why I'm pleased to introduce a new resource available from the Cystic Fibrosis Foundation.
An Impact Grant from the CF Foundation allowed my program, the Mothers' Retreat Program, to provide a space for moms of children with CF to get together and learn new approaches for addressing self-care, anxiety, and depression.
Caring for somebody with CF used to be a lonely journey. But that changed after I attended the first Volunteer Leadership Conference (VLC). I have attended the conference every year, and this year as a co-chair of the 15th VLC, I'm welcoming everybody to livestream it so we can share and learn together.
Three of our Impact Grant awardees tell us how the program has allowed them to make a difference.
Going from being pretty healthy for most of my life to being admitted to the hospital was scary and shocking. I decided to get help by asking for a peer mentor -- someone who also has cystic fibrosis. What I didn't expect was that I'd get amazing support and advice about CF and so much more.
With a late diagnosis, I had every reason to feel hopeless and alone, but getting involved and connecting to others truly gives me hope for my future.
As someone with cystic fibrosis, Lynch Syndrome, and CF-related diabetes, preparing for a colonoscopy can be a challenge. Fortunately, I've become very well-versed in how colonoscopies work and how to prepare for them over the past 10 years.