As a current nurse at the Johns Hopkins Adult Cystic Fibrosis Clinic and a former Johns Hopkins inpatient pediatric nurse, I have cared for so many patients and families affected by Cystic Fibrosis. I have gotten to know them and built personal relationships with these amazing people. I can't even begin to explain how much work they put into just maintaining their own life or their child's life. They put hours per day into their respiratory treatments alone, let alone the tens of pills they take daily. For those of us who take a daily multivitamin (at most), we have no idea how lucky we are. They require numerous doctor visits per year, have trouble gaining and maintaining weight, have digestive issues, struggle to breathe, and encounter numerous battles with insurance companies just to get the basic therapies they need to survive approved. And this is just scratching the surface of what these people go through and deal with on a day-to-day basis. This disease is also almost entirely internal, so these people do not appear to be sick, when, in reality, their bodies are working incredible hard to maintain regular function.
According to the CFF, the average life expectancy for people with CF is between 44-47 years old. This is currently an incurable disease, but hopefully not for long! We have to do better research and development. We have to continue working to develop treatments, and, ultimately, a cure for CF. Please join me in fighting this rare genetic, life-limiting disease so that those with CF can life full and fulfilled lives. Let’s make CF stand for Cure Found.
I walk for these people. Will you join me and support my Great Strides fundraising goal? Real progress has been made for those who have CF, but there is still no cure for this devastating disease and many lives are cut far too short.
By walking with me in Great Strides, you can help accelerate the Foundation’s pursuit of new therapies and provide vital support to meet the needs of the CF community.