My brother’s optimism despite living with cystic fibrosis has inspired me to advocate, share his story, and use my voice to push for positive change.
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I have faced the continuous need to self-advocate to manage my life with cystic fibrosis, particularly when facing complications post-transplant.
I have enjoyed pretty good health, so I have tried to keep my cystic fibrosis on the back burner while I pursue my passions. Sometimes, though, CF intrudes, reminding me that it’s still here.
My son, Keith, was diagnosed with pancreatic cancer after an initial focus on CF as the cause of his health issues. With people with CF living longer, we need more awareness of pancreatic cancer in CF individuals due to the potential increased risk.
Advocacy is impactful at all ages, but the term can sound intimidating. It implies effort, time, commitment, politics, and publicity. As a 30-year-old with cystic fibrosis, I am currently an active member of the CF community, but I was not always aware of the benefits, power, and impact of advocacy.
The antibiotics used to treat nontuberculous mycobacteria made me choose between the risk of hearing loss versus the reward of better lung health.
Sharing your CF story is one of the most powerful things you can do, but that can be hard for some of us. If you want to use your voice but struggle with how to get started, here are three things that helped me.
All my life, I thought I was clumsy. It turns out that I had a neurological condition, bilateral vestibular loss, that was in all likelihood caused by antibiotic use.
Since I could remember, my sister shared her CF story to raise awareness, and she inspired me to do the same. Now, with this year's Teen Advocacy Day, we finally get to advocate together.
Having two sons living with cystic fibrosis, I struggled for years with the financial burdens and restrictions of the insurance market. Since the Affordable Care Act was passed in 2010, I no longer have to worry about lifetime caps and astronomical premiums -- two issues that caused enormous grief for my family.