Cystic fibrosis

Dr. Lamas, a contributing Opinion writer, is a pulmonary and critical-care physician at Brigham and Women's Hospital in Boston.

When the winter comes, she gets on the slopes, and with the aid of supplemental oxygen, she is able to return to a sport she last enjoyed in high school. It will not be easy, and none of it is definite, but there is hope and life to live. It can be a lot to go through, a lot to process. She told me that there was a point when she had decided to start wearing sunscreen, thinking that perhaps she would live long enough for sun damage to matter after all. Still, many of those born with the disease today can expect to live into their 60s — a prognosis that will most likely continue to improve during their lifetimes. Even as she celebrates the improving pulmonary function that so many of her patients have enjoyed since starting Trikafta, she thinks of the patients who died just before the drug was approved or who received lung transplants only to die nonetheless. And thanks to a new drug that has revolutionized the treatment of this disease, she will likely live to celebrate her 40th and even 50th birthdays. She stopped working and moved to California so that she and her husband could be near her family and her sister’s children. As a middle schooler, she went on a deep dive — discovering the memoir of a man with the disease who was amazed to live past 25. They will grow up with an entirely different outlook, with a disease that for many will be chronic and manageable. But as she prepared herself for the possibility of a transplant, Ms. She went to culinary school and built a career as a freelance chef.