Life with Cystic Fibrosis as a minority
by Marieliz L.
Patient testimonials represent individual experiences and opinions of the individual patient. Experiences may vary.
Receiving a diagnosis of cystic fibrosis (CF), especially when it is a disease you have never heard of, can be terrifying and intimidating, leaving you in a desperate search for answers. When I finally got diagnosed with cystic fibrosis in high school (after being misdiagnosed all my entire life), I remember how scared and relieved I was at the same time.
I still meet with medical professionals who look at me strangely because I am a Latin woman of color; however, I look at myself as someone who educates and speaks up about my needs and I hope that it has made a difference in how these doctors treat the next minority with CF.
We often find that there are some doctors who may ignore our concerns and symptoms because we do not fit the “typical” CF patient mold. As a CF patient I have experienced this many times in my life and as a minority I want to help break the barriers of what is conventional for CF.
When you find a doctor that is reluctant to do their homework about the health challenges you might be facing – move on. Find a doctor who will help you and take your symptoms seriously. Why waste your time with a doctor who isn’t fully there for you and not making you feel secure as a patient? Find a doctor who is going to fight for you. I have gone through various doctors and now I have a wonderful CF team that fully supports me and it is the reason I am alive today, I fought for my life and my rights as a patient and so should you.
Spanish resources for the CF community
The CF community is an incredibly open and welcoming family. The challenge is and will always be education. I appreciate that there is more Spanish related CF information readily available, in fact I have had the honor of translating information myself, and in that regard, there is always more work to do to highlight the need for more resources and CF materials that can be offered to our Latino CF community.
I want Spanish speaking immigrants to find solace in the fact that they are not alone. There are resources available to them in Spanish and they can seek guidance at their local CF centers that have Spanish speaking representatives who can help guide them to other resources that they will need as they begin their journey with CF. The most important thing I want them to know is to always ask questions, always seek answers, and never settle. Even though I talk to doctors and medical staff, most of the time I think of questions after the appointment is over and say to myself “I should’ve asked that.”
Being part of The Extended CF Familia
Having the opportunity to be a part of The Extended CF Familia has been one of the biggest honors in my life. It allows Latinos living with cystic fibrosis the ability to have a platform that is specific to us and opens doors so that our community can obtain information, education, and connections. I am enormously proud of this extended CF Familia.
The wonderful thing about The Extended CF Familia is the resources it offers to Latino CF patients. It opens doors to information that is all in one place. It can help ease the anxiety and fears that accompany diagnosis, especially to a community that has barely ever heard of cystic fibrosis. I believe that everything that The Extended CF Familia offers is truly valuable.
CF has evolved in the sense that it is not a “Caucasian” disease. CF includes a community of minorities that are fighting CF too, but are easily overlooked based on past “standard” typical CF patient. You have Latino patients that are being diagnosed in their teens and later in adulthood. This should not happen, but it does; and there’s work to be done in expanding this CF diagnostic criteria and really listening to patients’ symptoms and realizing that CF exists outside the “normalized” standard.
As a Latina, I have faced discrimination, I have been ignored by doctors, but I am resilient, and I will continue to fight for myself and my Latino CF community.