CF While Being A Minority

One thing I was told many, many times by various pulmonologists is CF is a “caucasian” disease. It’s primarily a disease you find in someone who isn’t me. I never knew how to respond to these comments. At first, they made me uncomfortable and I would spend time looking back into my family tree trying to find if I had a caucasian relative. There were none.

Cystic fibrosis is not specific to race

I am a Puerto Rican woman and I have cystic fibrosis. My complexion is not fair and I spend a good portion of my time taming my semi-afro hair. I was recently hospitalized and told by a pulmonologist who came into my room with a bunch of medical students and he plainly said to me, you have CF? You aren’t white.

In front of his students and him, I said “I have CF, I am not white. It’s time you realized CF isn’t race-specific.” He apologized and his students stared at him in what would seem like embarrassment. I told his students that CF doesn’t discriminate. While cystic fibrosis may affect one race more than another, we should not be written off as an impossibility.

Doctors made me feel different

I used to feel alone and I used to feel as if I didn’t belong but it was mainly due to being a late diagnosis, I never factored my ethnicity into it until doctors singled me out. That’s when I learned that I was different and they saw me like that. In fact, it made me want to change their perspective a bit because even though I was their first encounter as a non-caucasian CF person, I existed.

I'm proud of my culture

Being of Puerto Rican descent isn’t something I would ever want to change because I am very proud of my culture. I am proud of the family I have. I am the first person with CF that my family knows of, but here I am.

Throughout the years since my diagnosis, I have met so many other people with cystic fibrosis of various different races and cultural backgrounds. The CF community is very big; there are African Americans, Mexicans, Puerto Ricans, Italians, and even Indians. The list goes on and on. While the population is not as large as the caucasian lineage, we exist.

Changing the narrative of CF and race

If I keep encountering doctors that question me because I do not fit the “mold” of what the usual CFer “looks” like, I am glad for that because I have opened their eyes to see that CF is not as one dimensional as they have thought.

CF is complex and with complexity comes new puzzles for them to figure out. The genetic testing that they can do can be broadened more. They can learn more about cystic fibrosis and how it mutates in different racial groups. I think this can help the cystic fibrosis community as a whole and we may one day find a cure--so no matter what color or race you are you can get the treatment that you need and deserve.

Being different allows me a platform to make a difference, even if it is in a small way. I love being me and I wouldn’t change it.

Have you had a similar experience? Share your story with us!