Because of the shortened life expectancy projected for those with cystic fibrosis, I was always cautious about the idea of having children. Those fears melted away after I started Trikafta® and received the greatest surprise of my life.
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The physical symptoms of cystic fibrosis can be debilitating. But the emotional trauma brought on by hurtful comments, financial burdens, and anguish my loved ones have faced because of my disease has been just as painful.
Here's a snapshot of six works we're spotlighting from members of the CF community. Whether they shared their story through writing or through song, their work has been shaped by their experiences of living with CF.
At 86, Marlene Pryson may be one of the oldest individuals living with cystic fibrosis. During her long life, she has dedicated many years of service to helping CF families as a CF clinic coordinator and family liaison.
Take it from me, dating with cystic fibrosis can be hard — from not having the energy to keep up with our partners to dealing with all the not-so-sexy aspects of the disease. But it’s important to not settle for anything less than the love and support we deserve.
Living with CF means I quickly became familiar with the patient side of the health care field. My experiences in the hospital have motivated me to become the kind of nurse that listens to and advocates for their patients.
As Evan's mom, I have to constantly decide where to invest my time, especially when it comes to providing feedback. So, when offered the chance to turn my survey fatigue into something that would actually make a difference and be less of a hassle to do, I jumped at it.