Hannah's Bananas

My name is Hannah, I’m 23 years old and I was diagnosed with cystic fibrosis when I was 6 months old. 

May is cystic fibrosis awareness month. According to recent studies by multiple sources; 70,000 to 165,000 people across 94 countries have cystic fibrosis. The National Organization for Rare Diseases says fewer than 200,000 people need to have the disease for it to be considered rare. We are slowly inching towards cf becoming more common. 

Although it appears we’re going to be a common disease soon, we’re still funded solely on donations and we still don’t have a cure. 

When i was born the life expectancy of a person with cystic fibrosis was 35 years old. in October 2019, the FDA approved the drug Trikafta. In previous years beginning in 2012, there have been 3 other modulators but Trikafta has the most successful outcome. 

Trikafta is only approved to work in patients that have at least one copy of the mutation F508. With more research, we can hopefully get a modulator that has the same outcome as Trikafta but all cfers can take. 

This is my story;

in 2001 I was diagnosed with cystic fibrosis and since then I've been diagnosed with cystic fibrosis-related diabetes, gastroparesis, liver disease, pancreatic insufficiency, anxiety, depression, and probably other things I can’t remember. 

I take a total of 30 pills not counting enzymes; 18 pills in the morning and 11 pills at night. 

I started Trikafta when it came out in October 2019. My lungs were functioning at 100% and at that time for me, that was low because I grew up with my lungs functioning at 120%. Since then my lung function has gone up and down with my lowest being 52% in August 2022. I spent 2 weeks in the hospital with an entire right lung full of pneumonia and also rhinovirus, my oxygen dropped so low I needed a nasal cannula and eventually bipap which led me to the ICU. I spent my 22nd birthday in the ICU at Cincinnati Children’s, this was my first time needing oxygen assistance and I was scared. I did stop taking Trikafta because of the mental health side effects and this occurred during the time I wasn’t taking it but before that, while taking it I hadn’t been hospitalized for my CF since October 2019. I’ve only recently decided to go back on Trikafta after trying another modulator with decent results. my lung function started going down again in 2023 and I had a few hospitalizations before I decided to restart, it took a lot of convincing because I just did not like the mental health side effects despite the amazing results it was giving me for my lungs. 

I've made many friends with CF and it’s great having a group of people that go through similar experiences. I hate it when one of my friends gets sick because most of the time we need to be hospitalized. I’ve lost many friends to cystic fibrosis and I know of many people that have lost their fight to it; babies, toddlers, teens, adults. I know of a kid that got a lung transplant when they were 5 years old, that’s not something a 5-year-old should ever have to experience but they did. 

Since being considered a rare disease, we receive no government funding and that makes it incredibly difficult to find treatments to help cf. It is through the generous donations of mostly people with a relative or friend who has cf. In my life I’ve only seen 1 billboard and 1 commercial for cystic fibrosis. 99% of people that I’ve met have never heard of CF and that unawareness is why so many of my friends have died before 30. 

Join me in my fight against cystic fibrosis. you can donate directly to my CF team

https://fightcf.cff.org/site/TR/GreatStrides/42_Greater_Cincinnati_Cincinnati?px3107939&pgpersonal&fr_id10414

or find my team on fightcf.cff.org my team name is Hannah’s Bananas.