I was recently diagnosed at 69 years old. Although it helped explain why I had been sick so often and gave me a new community, I can’t help but think about the lost time when my disease went untreated.
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My life was turned upside down when I was diagnosed with cystic fibrosis caused by a rare mutation, but my passion for figure skating has helped me stay healthy and happy through it all.
My wife and I were heartbroken when our daughter, Ruth, was diagnosed with cystic fibrosis as a newborn. But CF can’t stop us from being optimistic about what the future holds for our family.
After managing various chronic symptoms my whole life, I was finally diagnosed with CF as an adult. As I struggled to cope with the news, my community rallied around me and taught me what true support looks like.
I went from knowing nothing about cystic fibrosis to having the three most important people in my life diagnosed with the disease. I was shocked to learn that not only did my two children have CF, but also my husband had it.
Having a baby spend a long time in the NICU is difficult. Here are some things I learned about how to deal with it.
I felt like I was living with a secret disease because I could never find answers to what was causing the lump of mucus in my throat or the frequent cough that would often embarrass me at school or with friends. Then, finally, I uncovered the secret when I was diagnosed with cystic fibrosis at age 20.
Although she has two CF mutations, my daughter does not have cystic fibrosis. She has CFTR-related metabolic syndrome. She’s healthy now, but what about the future?
Despite my knowledge of cystic fibrosis, I was scared when my son was diagnosed with the disease. I already had a toddler and worried how I would balance her needs with his medical care. Now that he is a year old, I realize my fears were worse than reality.
At 26, I was in and out of the hospital with bouts of pain and coughing up blood, with doctors telling me I had pancreatitis. It took a trip to a new hospital — and advocating for my health — before I finally got my correct cystic fibrosis diagnosis.