I used to be afraid of the thought of participating in a clinical trial for a cystic fibrosis medication. But when my doctor asked me recently if I was interested, I jumped at the chance. My desire to help myself and the CF community finally outweighed my fears.
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Since Cystic Fibrosis Foundation Compass launched last year, we've learned so much from the community and have helped people with cystic fibrosis find creative solutions for all kinds of problems. That's why we are excited to unveil our new “Ask a Case Manager” blog series.
My son, Arjun, has had the deck stacked against him in some ways. He was born early, with cystic fibrosis, and needed surgery. His resilience, and my hopes for his future, keep me inspired.
Although I did my homework before having surgery to remove part of my liver, the process presented me with surprises and challenges. Here's what I learned from it.
Participating in the RARE study gave me an opportunity to play a role in finding a therapy that one day could help me and other people with CF who have two nonsense mutations.
Although cystic fibrosis is often considered to be primarily a lung disease, it is actually so much more.
I have had two collapsed lungs in three years. Here's what I learned.
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.
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.