Bringing CF Awareness to the Hispanic Community

When my daughter was diagnosed with cystic fibrosis, I found it difficult to explain this disease to my parents in Spanish, and I also felt alone in my rural community. That is why I think it is important to bring CF awareness to the Hispanic community. 

| 4 min read
Lili Hunt
Lili Hunt
Bonnie Ellen smiling next to a horse.

After having four children, my husband and I decided that we had enough children; so during our fourth child's birth, we decided to have surgery to prevent further pregnancies. Soon after that, we bought acres of land in a rural area and began to add livestock. We were enjoying the simple country life. One day I complained that I wasn't feeling very well. During an appointment with the OB-GYN, the doctor discovered that the tubal ligation had failed, and I was pregnant with baby number five.

Shortly after the discovery of my pregnancy, I was hospitalized to prevent further complications. One April morning, I went into labor. I was taken into surgery to deliver my daughter. Bonnie Ellen was born 10 weeks prematurely. She weighed a whopping 3 pounds and was transported to a nearby children's hospital. 

Little did we know that cystic fibrosis was about to take our life by storm. Our baby was hospitalized for 77 days. During that time, doctors discovered that she had a bowel obstruction that would take two surgeries to repair. After Bonnie Ellen took a genetic test, she was diagnosed with cystic fibrosis.  

Having a chronically ill child takes a lot of adjustment. My family was concerned and had many questions. My parents are Mexican and Nicaraguan and had never heard of cystic fibrosis. I researched CF so that I could explain the disease to my parents who were worried sick about their granddaughter.

It was difficult to have to explain a chronic illness we had just learned about, but it was even harder to explain it in another language.

I learned that 9.7% of the CF population in the U.S. is Hispanic, according to the 2020 Patient Registry Annual Data Report. That is why I felt it was very important to advocate and bring awareness to the Hispanic community. I was residing in a rural area and felt alone in this fight. I didn't know of anyone nearby who had CF or was Hispanic. I began to search for resources and found a wonderful support system online. I felt a sense of relief reading articles about Hispanics going through a similar journey to mine on the Cystic Fibrosis Foundation website. The website also had other helpful articles that gave me comfort. 

I feel it is important to share my story and uplift my Hispanic community. My advice to others in my community would be to reach out to your CF care team, explore the wonderful resources on the CF Foundation website, and continue to advocate and bring awareness. We are all in this together!

It has been quite a journey thus far. Our little girl is a blessing, and we are honored to be her parents, her advocates, and her support system. We are so honored to be celebrating National Hispanic Heritage Month with other CF patients like Bonnie Ellen. My hope is that in sharing my story, I can advocate and bring awareness to the Hispanic community. 

Interested in sharing your story? The CF Community Blog wants to hear from you.

This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

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Diversity, Equity, and Inclusion
Lili Hunt

My name is Lili Hunt, and my parents are Mexican and Nicaraguan. I grew up in Los Angeles in a diverse neighborhood. I have always enjoyed writing, reading, and trying new foods from all over the world. I am so excited to have the opportunity to advocate for the CF Hispanic/Latino community. 

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