I grew up on a 23-square-mile island in the middle of the Atlantic Ocean with about 5,000 inhabitants. Cystic fibrosis was unknown to me until I was 27 and got diagnosed in the U.S. I don't know if a diagnosis was possible while I lived in the Azores and if the resources would have been available to treat me.
As a child living in such a small area, you get the benefits of a supporting community, the freedom to run around anywhere but limited resources, especially with regards to health care. I feel like I had a normal childhood, playing with friends and going to school. I made the most of what I had. At times I was sick, but I never limited myself because of that. I absolutely loved the ocean and now -- looking back -- I wonder if it was because I felt good being near it or in it; most likely, being near the ocean helped me with some of my CF symptoms.
At age 19, I immigrated to the U.S. with my parents and grandmother as part of the family reunification program. In the U.S., attending university and graduating was my priority, but I struggled to learn English, and my health also struggled. Although I was sick at times while living in the Azores, it wasn't usually for a long period of time, and I was able to get better most times without consulting a doctor. In the U.S., my main struggle was the non-stop cough during classes, during job interviews, and at night, which then lead to a vicious cycle of being tired and falling sick again.
I was sick more often and for long periods of time. Asthma was the diagnosis I got from most doctors, but the various inhalers didn't help much. At the insistence of my fiancé at the age of 27, I consulted yet another asthma specialist who diagnosed me with CF. My asthma doctor called me at work and insisted that I come to the office for a visit as he would like to discuss test results with me, which he wasn't comfortable voicing over the phone. I was very apprehensive going to the appointment thinking that most likely I had some kind of cancer. He was very empathetic and told me I had CF, which I had no idea what it was. I was just happy it wasn't cancer.
As he talked to me about some of the symptoms, I wasn't very worried as I had already experienced most of them and had dealt with them as best as possible.
I did get really scared for my life when I got back to the office and actually Googled CF. What a shock!
I made my first appointment at the Boston CF clinic, which was very helpful as I began to understand that CF could be managed.
After the initial shock of learning about CF, I actually started feeling better as my new meds were actually working for me. In the U.S., the health care resources to help me after I got diagnosed were enormous, and I got to meet great doctors and a great team at the Boston CF clinic that helped me be healthier.
Having a concrete diagnosis also helped my parents understand why their first child died.
My older brother was just 26 days old when he passed away because he couldn't breathe. At that time in the Azores, there was nothing the doctors could do for him. Although we don't know for sure that he had CF, we feel strongly that was the reason. My parents lost their infant child with no explanation of what had caused his death. When I explained what CF is to them, they immediately related some of the symptoms to the loss of my brother. It was like they were still waiting for an explanation for his death even after all these years. Although it is hard to learn your child has CF, for my parents it also gave them closure for the child they had lost. I cannot understand the loss my parents went through, but I know that I want to take care of my health, so they don't have to feel that again.
After my diagnosis I returned to the Azores to visit family and friends. I wanted my family to be aware that I had CF as most likely they carried the same genes. Although I didn't know anyone who had similar symptoms, I felt like I had to let them know. I also wanted to talk to the doctor who had treated me while I lived there. The doctor had worked very hard to help me while I was there, but he never thought I had CF; he had traveled a lot and knew all about CF. His reaction to my diagnosis was the most intense I have ever seen of anyone whom I told that I had CF. His facial expressions showed surprise, consternation, panic, denial, and fear, and I had to be the one to reassure him I was going to be OK. I got different reactions when I explained CF to friends and family, but to me it was important to provide awareness to this disease.
Living in the Azores, my health had been stable. In the U.S., I have access to great doctors and medical resources that have enhanced my health. Today, I feel better than when I lived in the Azores. The support of my family and friends cannot ever be overstated.
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