Ella Balasa, Age 30, Cystic Fibrosis
How would you explain cystic fibrosis to a child?
Cystic fibrosis is a rare genetic lung disease which causes a buildup of mucus in the lungs that leads to chronic lung infections. Treatments consistent of inhaling medications including antibiotics to keep the lungs clear of mucus and infection. Over time, because of the chronic infections, this damages the lungs and leads to lung function decline and can eventually lead to respiratory failure.
What would you want the world to know about cystic fibrosis?
I want the world to know that CF, or diseases that people face in their lives can be both a curse and a blessing. CF has shaped my passions, perspective on life. The health obstacles and limitations are difficult and although I’ve had significant health challenges, it’s the cause of my motivation to do as much as I can in the time I have because I understand the brevity of life.
In my unique way and on my timelines, I’ve been able to accomplish a lot. As people living with conditions, we all want to have a fulfilled life despite illnesses.
What does it feel like to live with cystic fibrosis?
Having cystic fibrosis feels like I’m breathing through a straw at times. The function of my lungs has declined due to the cycles of infections and inflammation causing scar tissue. Despite CF being an invisible illness, I have had to shed the cloak of “being normal” and embrace my differences and handicaps when I require using supplemental oxygen through a nasal canula to assist my breathing.
What brings you joy?
The CF community has given me joy from gaining and giving support to others who face similar challenges. Over the years, I’ve created friendships from connecting with others through social media and engaging with the broader CF community through my involvement with the CF Foundation. These connections have not only served as meaningful relationships, but have been very valuable resources in times of uncertainty, need, or just for learning something new about how to navigate this CF life of ours.