My storyGetting diagnosed
I was diagnosed with cystic fibrosis in July 2009 at the age of two. For the first two years of my life, it seemed like I was constantly sick, needing treatments and overnight hospital stays. The doctors were treating my symptoms as if I had asthma. However, I was not responding as expected to the medications. Because of this, my parents looked elsewhere. After my cousin was born, she was screened for CF, and when my parents heard about it, they decided to get me screened as well. What's Next? For the most part, I can live a long, fulfilling life. I just have to live it a little different. I have daily commitments due to my cystic fibrosis to complete tiring treatments and lifestyle changes to better my health and quality of life. |
Introducing Leah... |
Treatments and routines
I used to have to be admitted to the hospital around once a year for two weeks, but since I got on a medication called Trikafta, I haven't had to be admitted since 2019. Now there is a new drug that I have started on called Alyftrek, which isn't necessarily better, but it's an advancement that requires taking a pill only once vs. twice a day. And while this is good, it isn't a cure. I am hopeful that one day with support a cure could be found to not only help me but also others who are born with CF.
DAILY TREATMENT ROUTINE
- Oral treatments: Vitamins, Alyftrek, enzymes, etc.
- Airway clearance: A vest that vibrates and shakes me for 30 minutes to help break up the mucus in order to keep my lungs clear.
- When sick: increased treatments and aggressive antibiotic treatments are added to my routine.
INFECTION CONTROL
Avoiding the spread of germs is crucial in order for a person with cystic fibrosis to stay healthy. Cystic fibrosis puts the airways at risk for lung infections. When I get sick, the infection can settle in to my lungs easier because of the thick sticky mucus in my body.
1. Good hand hygiene - One of the best ways to keep from catching or spreading germs is through effective hand-washing.
2. The six-foot rule – staying at least six feet away from someone who is sick.
3. Getting the flu shot each year - People with CF can develop more serious cases of the flu, so it is important to get a flu shot.
DAILY TREATMENT ROUTINE
- Oral treatments: Vitamins, Alyftrek, enzymes, etc.
- Airway clearance: A vest that vibrates and shakes me for 30 minutes to help break up the mucus in order to keep my lungs clear.
- When sick: increased treatments and aggressive antibiotic treatments are added to my routine.
INFECTION CONTROL
Avoiding the spread of germs is crucial in order for a person with cystic fibrosis to stay healthy. Cystic fibrosis puts the airways at risk for lung infections. When I get sick, the infection can settle in to my lungs easier because of the thick sticky mucus in my body.
1. Good hand hygiene - One of the best ways to keep from catching or spreading germs is through effective hand-washing.
2. The six-foot rule – staying at least six feet away from someone who is sick.
3. Getting the flu shot each year - People with CF can develop more serious cases of the flu, so it is important to get a flu shot.
Leah's CF video (2011) |
CF - In Leah's Own Words (2013) |
