Embracing Your Personal Journey With CF
Uncommon Lungs: Beyond the Episode
Tell us about your journey to receiving your CF diagnosis and the changes your family went through during this process.
I was born in Guatemala City, Guatemala. After a few months of birth, my parents realized I had difficulty gaining weight, so my pediatric physician gave me enzymes to control the issue. However, one day, my father kissed my forehead on a hot, sweaty day. He instantly realized my sweat was abnormally salty after licking his lips and began to ask questions.
After going to various specialists, we encountered one particular pulmonologist who informed my parents of [a genetic disease] called cystic fibrosis. Once the diagnosis was confirmed, my parents were left with many questions. First, what is CF, and what must we do to ensure she’s healthy? Unfortunately, the physician told my parents there was limited information about the condition; therefore, they were unsure if I would make it past one year. However, the only solution was to treat me as an asthmatic patient. After a few months of treatment, I still was not gaining much weight, and my cough began to increase. My parents then realized they had to figure something out quickly.
My father decided to reach out to his brother, who lived in West Palm Beach, and told him of my case and asked him if he could find out if there is any treatment for CF, and, if so, what has to be done to receive it. After a few days, my uncle contacted my parents with fantastic news. He found a hospital near his house that had a clinic just for people with my condition, and it didn’t take much for both of my parents to agree that they had to sacrifice everything and move to the States so I could get the care I needed desperately. On April 6, 1991, we arrived in a new country without knowing the culture, the language, and with a small support group, our new life began for my father, mother, sister, and me.
How has having CF influenced how you show up in the world?
I am a daughter, a sister, a niece, a cousin, a friend, a speech-language pathologist, and a woman who has cystic fibrosis. CF is a big part of who I am; however, it is not all I am. Cystic fibrosis has taught me to live life to the fullest, love, and enjoy life because life is a gift, and every breath you take should never be taken for granted. I walk around confidently because although I know I battle with my health, I am also a woman with dreams that has a lot to offer the world, and I am not ashamed of who I am.
“I walk around confidently because although I know I battle with my health, I am also a woman with dreams that has a lot to offer the world, and I am not ashamed of who I am.”
– Maria, speech-language pathologist with CF
Do you feel that your personal “timeline” for hitting certain life milestones has been different than that of your peers? If yes, how so?
Personal “timelines” for hitting certain life milestones have differed due to CF from the rest of my peers. But not because CF has inhibited me from them but because I have decided it to be that way. At my age, many of my friends are already married with children; however, I’m single. I have chosen that for me because, with someone with CF, you have to be almost 100% certain that the person you decided to spend the rest of your life with is fully committed to me and be ready (as much as possible) for what can come and what the future may look like.
Are there any cultural barriers you and your family had to overcome to feel accepted when you moved to the US? Did that impact your experience at hospitals or CF centers?
The only cultural barrier my family and I had to overcome when moving to the United States was communication due to language differences. A translator was needed when communicating with physicians, nurses, respiratory therapists, dietitians, social workers, and any other professionals part of the CF team. Because my parents had so many questions about my condition, it was hard to communicate those concerns without a translator. I was too young to remember, but my parents and sister, who was 6 years old then, still remember. Although there was a language barrier that complicated things [and] sometimes there was no translator available, the hospital and the CF centers made it easy for us. They always found a way to make my parents feel comfortable with understanding the information given to them and address all of their concerns.
How did your support system play a role in your positive outlook on life and your strong sense of self?
My entire life, loving people have always surrounded me. Beginning with my father, mother, and sister, as I have mentioned before, [who] left everything they knew behind to start a life in a new place for me. If that doesn’t tell you where my strong sense of self comes from, then I don’t know what will. They say it takes a village to raise a child; that couldn’t be more true for a child with a life-threatening condition. Not only do I have my parents as support, but I also have loving grandparents, aunts, uncles, cousins, and friends who genuinely love me and have been with me every step of the way. They all look out for me and want what’s best for me. I honestly couldn’t ask for a better support system. I have a strong love for life because life is a gift that can be taken from you at any moment; therefore, no matter what curve balls life gives you, they’re all lessons and should never be taken for granted.
What inspires you most about the CF community?
What inspires me most about the CF community is its many support groups for children, youth, and adults who have CF and their families. CF is not only a battle for those directly affected but also for their families. The fact that there are so many support groups out there is truly incredible.