My Patient Story
Congressional District: VA07
Lung Disease, Rare Disease
Issues and Challenges
Ella has encountered: Rare / Underserved Disease, Invisible Illness
My name is Ella (instagram: @thisgirlella) and I am 28 years old. I am a writer, a patient advocate, a scientist, and someone born with cystic fibrosis. Diagnosed at 18 months old, CF is a life-limiting, invisible, chronic, and rare lung disease. Since being a child, I’ve had countless hospitalizations to receive intravenous antibiotics to treat the lung infections that are the hallmark of this disease. These infections deteriorate the lung tissue over time, reducing function, and ultimately leading to failure requiring a double lung transplant to prolong life. My disease is becoming visible as I require using supplemental oxygen with physical activity, but despite having 28% lung function, I’ve never let it be my excuse. I graduated with a degree in biology and have worked in an environmental microbiology lab. Over the past few years, as the progressive symptoms have required me to work less and spend 4 hours a day doing breathing treatments and airway clearance, I have become increasingly involved in health communities sharing my story of the hardships and triumphs that come with living with a chronic illness. I’ve also found opportunities to engage in the science community by serving on research committees, organizing research-focused CF virtual conferences, and speaking on various platforms including the FDA about the need for the development of novel therapies for the treatment of antibiotic resistant infections. I’ve also developed my passion for writing, through which, I have been able to provide a scientific voice and encourage empowerment to others with illness. I have been published on HuffPost, STATNews, and have a column on CF News Today. I have gotten much joy from gaining and giving support to others who face similar challenges. I’ve created friendships from connecting with others through social media and engaged with a broader community speaking at events to raise awareness about CF. I describe CF as my greatest blessing yet most awful curse, as although it limits my life tremendously, it has shaped me to be the person I am.
My Motivation and Inspiration
I describe CF as my greatest blessing yet most awful curse - although it limits my life tremendously, it has shaped me to be the person I am.