My Great Strides Story
Angela Scottodifrega
Angela Scottodifrega
There is currently no cure for cystic fibrosis and too many people with CF die young.
CF is a genetic, life-shortening disease that devastates the lungs, pancreas, and other vital organs. CF makes it difficult to breathe and fight life-threatening infections, often leading to extensive lung damage and respiratory failure.
I was diagnosed with Cystic Fibrosis at age 7. Four out of my five older siblings were diagnosed as well. Since then it has been a struggle balancing my social, personal life and health. There is a strict regimen of treatments for CF’ers to commit to everyday. This includes nebulizers, inhalers, air clearance vests and oral medications. These treatments plus exercise and a healthy diet are crucial for the health and wellbeing of a CF patient. Having a positive attitude helps me maintain a happier lifestyle. My treatments take me an hour twice a day. Over an entire year that’s 43,800 minutes or 730 hours. If you’re ill or having medical issues it could be many more hours. When I experience exacerbations (flare ups) or become ill with even just a common cold that can cause my health to decline. This can either increase my treatments or cause me to be hospitalized to receive IV antibiotics. Since 2021 I’ve been hospitalized four times. One stay was for two weeks for IV antibiotics. Throughout my entire life I struggled to gain weight suspected to be due to my congenital diaphragmatic hernia as a baby. However, keeping your weight up as a CF patient is so important when it comes to handling infections. CF patients were so lucky to have been able to be involved in taking Trikafta; a new drug used to improve patients with certain genes. I started trikafta and the mixture of that medication, eating better and working out I am managing to finally gain healthy weight and get my lung function to rise. Ever since the five of us siblings have been diagnosed with CF we have been on this journey together and continue to fight. My wonderful parents are so supportive and encouraging since we’ve been diagnosed as well all of my other family members and friends.
Every person born with cystic fibrosis is on a unique journey and experiences this challenging disease differently. We need a cure so that everyone with CF has a better chance to live a long, healthy life.
Will you help us end cystic fibrosis?
By donating to my fundraising goal, you have the power to advance the research and science needed to drive our shared dream forward – a cure for everyone with CF.
CF is a genetic, life-shortening disease that devastates the lungs, pancreas, and other vital organs. CF makes it difficult to breathe and fight life-threatening infections, often leading to extensive lung damage and respiratory failure.
I was diagnosed with Cystic Fibrosis at age 7. Four out of my five older siblings were diagnosed as well. Since then it has been a struggle balancing my social, personal life and health. There is a strict regimen of treatments for CF’ers to commit to everyday. This includes nebulizers, inhalers, air clearance vests and oral medications. These treatments plus exercise and a healthy diet are crucial for the health and wellbeing of a CF patient. Having a positive attitude helps me maintain a happier lifestyle. My treatments take me an hour twice a day. Over an entire year that’s 43,800 minutes or 730 hours. If you’re ill or having medical issues it could be many more hours. When I experience exacerbations (flare ups) or become ill with even just a common cold that can cause my health to decline. This can either increase my treatments or cause me to be hospitalized to receive IV antibiotics. Since 2021 I’ve been hospitalized four times. One stay was for two weeks for IV antibiotics. Throughout my entire life I struggled to gain weight suspected to be due to my congenital diaphragmatic hernia as a baby. However, keeping your weight up as a CF patient is so important when it comes to handling infections. CF patients were so lucky to have been able to be involved in taking Trikafta; a new drug used to improve patients with certain genes. I started trikafta and the mixture of that medication, eating better and working out I am managing to finally gain healthy weight and get my lung function to rise. Ever since the five of us siblings have been diagnosed with CF we have been on this journey together and continue to fight. My wonderful parents are so supportive and encouraging since we’ve been diagnosed as well all of my other family members and friends.
Every person born with cystic fibrosis is on a unique journey and experiences this challenging disease differently. We need a cure so that everyone with CF has a better chance to live a long, healthy life.
Will you help us end cystic fibrosis?
By donating to my fundraising goal, you have the power to advance the research and science needed to drive our shared dream forward – a cure for everyone with CF.
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