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Inspirational Stories

This is what it looks like to have CF. Yes, there are struggles, hospitalizations, illnesses and surgeries. There is also a lot of hope for a long, bright future!

Family Resilience Against Cystic Fibrosis (CF)

We want to hear your CF journey. The inspiration you’re seeing from our Hispanic community is new. We’re delighted to include their much needed perspective. We want everyone in the CF community to be represented. To see more about how CF impacts the Hispanic community, please visit our CF Familia page.

by Olga G.

Patient testimonials represent individual experiences and opinions of the individual patient. Experiences may vary.

The illusion of motherhood is a feeling that is hard to describe, a feeling of unconditional love, the wonderful and incredible fact of creating life, learning to take care of another person, guiding their steps in the world, and raising a human being.

I remember when they confirmed my pregnancy and that I would have a girl, I experienced a feeling of sheer happiness, tenderness, and all those sweet experiences that awaited me. What I didn’t know was that three months after her birth, a bucket of cold water would fall on all those emotions after receiving her cystic fibrosis (CF) diagnosis.

Olga María, my daughter, was born in California by cesarean; my husband was present at her delivery and when we saw her for the first time, we both agreed she appeared tiny and fragile. My husband later confessed that he was very worried about it.

A new chapter full of challenges

A few weeks after she was born, they let us know. They had detected Olga María’s illness through the cystic fibrosis neonatal screening test. The only thing they told us was that we had to go to Children’s Hospital for an appointment so that they could explain her condition to us. We had no idea what it meant, what we were facing, countless doubts, and a sense of deep sadness arose as we found that my baby had a genetic condition.

The next challenge was to learn about the condition, its origin, implications, treatments, life expectancies and all the possible information we needed to know in order to face the situation with the best possible attitude and from a place of strength.

Since Olga María was born in the United States, this gave us the opportunity to better understand her diagnosis at three months old and to treat her condition with specialists, with access to adequate tests, treatments, and medications. In my home country, this would not have been possible.

In search of answers

As we investigated the hereditary traits and genetics of cystic fibrosis (CF), I learned that three of my husband’s first cousins were born with the condition. We also learned that access to some specialty care or medications are not prescribed or dispensed in countries other than the US. For example, the costly vibrating vest for respiratory therapy is not covered by health insurance in some countries outside the US.

The process of acceptance, self-doubt, and awareness is difficult. That is why all of us who are around people living with cystic fibrosis (CF), their caregivers, their relatives, their friends, and professionals seek empathetic and adequate treatment. We are all part of this.

Therefore, it is imperative to share experiences, testimonials, and valuable information that carries the message to as many people as possible, so they can learn everything about this hereditary condition, and how we can best provide patients the tools to lead as normal a life as possible.

Resilience and support in the Extended CF Familia

Olga María has been surrounded by support and care from everyone around her. Today at 12 years old, she administers the respiratory treatment herself, puts on the vibrating vest and turns it on, finishing her daily therapy with a resilient attitude with minimal supervision. I wish the same resilient attitude for all people diagnosed with cystic fibrosis (CF). And for those who have not yet been diagnosed and are subjected to inadequate treatments, I wish them better access to studies, the latest information about their condition, access to treatments and medications within reach and everything that can help to provide them with better health outcomes.

I am a champion of cystic fibrosis (CF), I am part of the Extended CF Familia, I take pride in being part of the community contributing to a better and supportive world. There are many hurdles along the way and much to do from the moment we join this community. Being part of a group is an important pillar within the hierarchy of our most basic needs. The Extended CF Familia makes more people living with cystic fibrosis (CF) feel heard and that means unconditional support and the idea that everything will turn out well, just like the feelings one has when embarking on the journey of motherhood.

Life with Cystic Fibrosis as a minority

We want to hear your CF journey. The inspiration you’re seeing from our Hispanic community is new. We’re delighted to include their much needed perspective. We want everyone in the CF community to be represented. To see more about how CF impacts the Hispanic community, please visit our CF Familia page.

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.

CF care as part of motherhood

We want to hear your CF journey. The inspiration you’re seeing from our Hispanic community is new. We’re delighted to include their much needed perspective. We want everyone in the CF community to be represented. To see more about how CF impacts the Hispanic community, please visit our CF Familia page.

by Alicia

Patient testimonials represent individual experiences and opinions of the individual patient. Experiences may vary.

My name is Alicia. My husband Peter and I have two sons. Our second-born, Marc Anthony, is 20 years old, and has cystic fibrosis (CF).

Marc Anthony started showing complications since birth. Being the second child, I could tell the difference in his development compared to his brother: he was hungry all the time, he was thin but with a distended belly, and he exhibited breathing and digestive problems.

At the beginning, doctors diagnosed him with many other problems without proper tests until he started presenting breathing issues. Even then, he was diagnosed with asthma.

Every diagnosis led my husband and I down a frustrating path of hit-or-miss diagnoses probably because a CF diagnosis was immediately discarded just for being Hispanic. Also, his pediatrician at that time was young, and he didn’t have much experience with CF.

Marc Anthony was finally accurately diagnosed with CF at the age of six.

Facing the diagnosis

Initially, I thought dealing with my son’s medical needs was something I could simply add to my standing to-do list given that when one becomes a parent, one simultaneously enters the role of caregiver. However, for parents of children with a chronic illness such as CF, the role of caregiver takes on a whole new meaning.

As I immersed myself in the caregiver role, it was sobering to discover the extraordinary demands it placed on my time and physical and emotional energy. Soon it became impossible to downplay the strenuous implications of dealing with what felt like a constant juggling act: endless medical appointments, insurance bills, prescriptions, medical equipment, and daily treatments. That was when I decided to go on a quest to find caregiver support, and thankfully, discovered that I was not alone. The CF community includes a robust ecosystem of caregivers consisting of dedicated doctors, nurses, specialists, researchers, pharmaceutical companies, and CF patients and their families.

The art of caregiving

Over time, my approach to caregiving has morphed from checking tasks off a to-do list to adapting to a new way of being. At a certain point, effective caregiving is no longer about doing more, it’s about caring more for what you’re already giving. This begins with remembering to care for myself and to nurture my resilience; that precious resource that enables me to care for others. I’m better at loosening the grip on the way I think things should be. This enables me to stay open to receiving and learning from what life brings so that I can continue to evolve along with my son’s needs.

I have chosen to embrace my role as a caregiver by aligning opportunities within the caregiver ecosystem with the things that I’m skilled at and enjoy doing. The more involved I become in the ecosystem, the more nourished and equipped I feel to support myself, my family, and others on a similar journey. Caregivers give care through sharing their time, skills, and energy. As individuals, our capacity is limited, and one can only give so much.

Accompanying others in their CF journey

Looking back at 2008 when Marc Anthony was diagnosed with CF, I could have never predicted how my journey as a caregiver would evolve. Over the last years I’ve transitioned my professional skills and expertise to serve others as a resilience coach and a mindfulness meditation teacher through my practice called BeingWell.life.

Also, for the past 10 years, my husband and I have been involved with the annual Cystic Fibrosis Research Institute’s (CFRI) National CF Education Conference. I currently serve as a member of the CFRI Diversity Committee and the CFRI Embrace Mothers Retreat Planning Committee. Simply mentioning the Embrace Mothers Retreat brings a smile to my face. This event has shown me that amidst the adversity of a caregiver’s journey, it is possible to experience joy and fulfillment from building loving, connected relationships with others who can relate.

I’ve also led the creation of a Parent Advisory Council at the CF Care Center at Children’s Hospital of Orange County (CHOC). And have served as a CHOC Parent Partner on the national Cystic Fibrosis Learning Network.

Now, as part of The Extended CF Familia, I continue to share and receive through an inclusive platform that is mindful of a diverse CF community and committed to addressing our needs. I am encouraged by the collaborative relationships emerging between members of the robust ecosystem to lead to better health outcomes for those living with CF.

A bright future

There was a time when Marc Anthony was around 14-15 years old, when he realized he had a life-threatening disease, and he thought he was never going to go to college or get married. Now, he is a sophomore in college studying real estate finance and law. He wants to do business law, he is investing, saving money, and these are all signs that he is preparing for the future.

His strict routine with medicines, workout, and vitamins have allowed him to live a typical life in all aspects: school, exercise, and even part-time jobs.

Each day I feel more content and fulfilled than ever as I look forward to learning from and supporting others, as I feel blessed by all that I’ve received. I’m inspired by the possibilities that lie ahead.

Share Your Story

Anytime is a great time to tell your CF story! We’re listening… change someone’s life with your story. Fill out the form to share your experience.

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