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.

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.

After having four children we decided that four was plenty enough for us. So during our fourth child’s birth we decided to have surgery to prevent further pregnancies. Soon after we settled in the country. We bought acres and began to add livestock. We were enjoying the simple country life. I would often carry fifty pound feed bags to the barn for our animals. One day I began to feel unwell. My spouse and I agreed that making an appointment with my obgyn would be a good idea. During that appointment my doctor discovered that the tubal failed and I was pregnant with baby number five. The ultrasound confirmed that I had a placenta previa that later progressed into an acreta. A placenta acreta is life threatening and can often lead to uncontrollable blood loss or death. Shortly after that I was hospitalized to prevent further complications. One April morning during my hospitalization I collapsed and lost consciousness. I was taken into surgery to deliver my daughter. My daughter was born ten weeks prematurely. She weighed a whooping three pounds. She was transported to a nearby Children’s Hospital. Little did we know that our journey with CF was about to take our life by storm. My baby was hospitalized for 77 days. During that time it was discovered that she had a bowel obstruction. The bowel obstruction took two surgeries to repair. We spoke with a genetics counselor and shortly after the results were in she was diagnosed with Cystic Fibrosis. It has been quite a journey thus far. Our baby girl is a blessing and we are honored to be her parents, her advocate’s, and her support system. She was born into a big loving family that will always be by her side no matter where CF takes us. Our baby girl was born out of a failed tubal ligation, she was featured on the news, she lived through a tornado that just passed the hospital, she had her story published in the local newspaper, and is currently living through a pandemic! She did all this before turning two year’s old! There are so many children/adults with stories alike to my daughter’s story. I am truly inspired by these amazing individuals. They give me the strength I need to be a CF Caregiver. My daughter is my hero. I feel her story deserves to be told. Just like every Cystic Fibrosis warrior out there.

– Lily