Cystic fibrosis (CF) is a genetic and chronic disease that affects the normal function of the lungs and other organs, leading to persistent lung infections and progressive breathing difficulties. Patients with cystic fibrosis experience a series of symptoms, including very salty-tasting skin, persistent coughing with phlegm, frequent lung infections including pneumonia or bronchitis, wheezing or shortness of breath, poor growth or weight gain in spite of a good appetite, frequent greasy, bulky stools or difficulty with bowel movements, and infertility in men. Some patients suffering from CF are celebrities or became celebrities due to their fight against the disease.
1. Alexandra Deford
Alexandra Deford is the daughter of the sports writer Frank Deford and she died in 1980 at just eight-years-old. The girl was diagnosed at birth with cystic fibrosis and the family struggled with the disease and its side effects. The story moved millions of people after it was made public in the form of a book titled “Alex: The Life of a Child.” The book was written by Frank Deford and it was later adapted into a television movie. Despite the fact that it was first published in 1997, the book based on the life of Alexandra remains a reference for patients and families going through the same journey.
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“Invariably, and happily, there’s usually someone at each appearance who either brings that book or wants to talk about their connection to cystic fibrosis,” said Deford. “It’s tremendously gratifying to me. Rarely does a week go by that I don’t get a letter about that book. People leave things at her grave. They really do. I have people tell me that she changed their lives. It’s terribly dramatic, but they literally say that. I heard from a woman who became a pediatric nurse after reading the book. Hearing from people like that means more to me than anything.”
2. Alice Martineau
Alice Martineau was a popular British pop singer and cystic fibrosis sufferer who died in 2003 at 30-years-old. During her lifetime, she was a successful singer and model, and she defeated death many times. Despite the young age of her death, Alice Martineau was told on many occasions that she would die much younger. She was also the subject of an hour-long documentary called “The Nine Lives of Alice Martineau,” produced by the BBC. Roughly a year before her death, Alice wrote an article for The Daily Telegraph’s Saturday magazine, about the wait for a life-saving triple transplant.
“Even now, I don’t think of myself as being all that ill, but I suppose that I am,” she wrote. “I am attached to a machine that gives oxygen to me day and night. I only digest about two-thirds of what I eat so I also have a tube in my stomach. I have to have three lots of chest physiotherapy a day. I also have a 14-day course of intravenous antibiotics once a month. I also have to swallow about 40 pills a day. Despite all this, I still tell myself that I am not ill – but someone is trying very hard to tell me the opposite.”