9 Famous Cystic Fibrosis Patients
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.”
3. Andrew Simmons
Andrew Simmons, best known as Andy Boy Simmonz, is a British professional wrestler who was diagnosed with cystic fibrosis. The combination may seem unusual, but Andrew, who was born in 1984, did not settle for the diagnosis and continued to be an active sportsman. He not only pursued a career as a wrestler, but he also achieved success in his sport. He won titles such as the Italian Tag Team titles w/James Tighe, the FWA British Tag Team titles w/Duke of Danger – at Hampton Court, the NCW European title, and CWC All In title. Andrew struggled with cystic fibrosis during his childhood, and he even considered retiring due to medical problems.
In 2006, he shared in a blog post the medical problems he was going through. “Is it really all worth it?
For the past 4 weeks, that’s what I been asking myself,” Andrew Simmons questioned after suffering a lesion in his leg. “I am writing this mainly as I’m not sure yet whether I’ll be coming back to wrestling, I’ve done nearly everything I’d have liked to have done in wrestling, plus a lot more. When I first started my training did I ever think I’ll go abroad on more than 12 different occasions, wrestle for WWE at Wembley Arena, wrestle the finest British wrestlers around and most importantly make some truly great friends.”
4. Bob Flanagan
Bob Flanagan was an American writer, poet, performance artistic and comic, who was born in 1952. Flannagan used his pain and struggle with cystic fibrosis as an object for his work. His sadomasochistic performances were based on his battle against the disease, although he was at the time, one of the longest-living survivors of cystic fibrosis. He died at the age of 43, in 1996, 17 years after the death of his older sister, Patricia, who was 21 when she succumbed to CF. Flanagan’s first of five books was published in 1978 and titled “The Kid is a Man.” He was also the protagonist of the 1997 documentary film “Sick: The Life and Death of Bob Flanagan, Supermasochist,” which was directed by Kirby Dick.
One of his most famous mottos was “fight sickness with sickness.” Therefore, he explored sexual taboos in his work and was open about his sadomasochist relationship with wife Sheree Rose. “Why? Because it feels good. Because it gives me an erection,” he says in the video “Why“, written in 1985. “Because I’m sick, because there is so much sickness. Because I was alone a lot, because I was different, because kids beat me up on the way to school,” he continues in a parallel between his life choices and the struggles he faced due to cystic fibrosis.
5. Fredric Chopin
It is not fully known if Frederic Chopin, the famous Polish composer, actually suffered from cystic fibrosis, or if it is just a rumor. However, many investigators believe that Chopin, who lived between 1810 and 1849, suffered from undiagnosed cystic fibrosis. “Since Chopin’s death 140 years ago, no one has questioned seriously the theory that he died of tuberculosis, in spite of the knowledge that many of the physicians who treated his illness considered tuberculosis an unlikely cause of his chronic respiratory disease, which was of at least 24 years’ duration,” state the authors of the study “Was Frédéric Chopin’s illness actually cystic fibrosis?”
“Although 170 cm in height (5’7″), Chopin weighed less than 45 kg (99lbs) throughout his life. He was noticeably emaciated and had a marked tendency to lose weight after respiratory infections and with dietary indiscretion. His exercise tolerance remained far below that of his peers throughout his lifetime. He was affected by a debilitating chronic cough, which was often productive and was worst in the morning. This cough persisted from 15 years of age until his death of cor pulmonale at 39 years of age. Chopin suffered multiple acute, severe respiratory infections of both the upper and lower respiratory tracts which worsened in winter. He had hemoptysis (couging up blood) for 18 years. In later life, he grew markedly barrel-chested. He may also have been infertile. Chopin’s autopsy revealed gross cardiomegaly and changes in his lungs which were not consistent with cavitating tuberculosis. These features suggest that cystic fibrosis may have been the cause of his ill-health and death. Chopin’s sister Emily, died at 14 years of age, possibly also of cystic fibrosis.”
6. Gregory Lemarchal
Gregory Lemarchal was a French singer and winner of the fourth series of the reality TV program Star Academy, who died at the age of 23 from cystic fibrosis in 2007. During his lifetime, Lemarchal became known not only for his music but also as an advocate for the disease. He became France’s champion of acrobatic rock in 1995, but his career only took off after the show. Following that, he performed duets with famous singers like Yannick Noah, Michel Sardou, Patrick Bruel, and Lucie Silvas, and in January 2006, he won the breakthrough artist of the year award at the NRJ Music Awards. Lemarchal was barely two-years-old when he was diagnosed with cystic fibrosis and he died in a Paris hospital waiting for a lung transplant.
After his death, the Association Gregory Lemarchal was created in his honor to help others fight cystic fibrosis. “Shortly before leaving us still with this crazy hope that this can happen, the lung transplant that could save him, Gregory had expressed his clear desire to no longer be silent, ‘I can no longer remain silent. After that I will be grafted, I will not keep silent anymore.’,” states the association. “That is why today we continue through the association that bears his name, his fight and that of all those who suffer from cystic fibrosis because together, and only together, we can achieve as quickly as possible the goal we have set ourselves with Grégory: ‘Winning the fight, so that never again will CF keep us away from those we love.'”
7. Gunnar Esiason
Gunnar Esiason is the son of former football player and star Boomer Esiason. Gunnar, who is now 24-years-old, was diagnosed at birth with cystic fibrosis. Regardless of the disease, he grew up surrounded by sports, practicing football, lacrosse, ice hockey, golf and more. Gunnar’s parents, Boomer and Cheryl, decided not only to focus on helping their son but also on helping others fight the disease. With this hope, the family created the Boomer Esiason Foundation (BEF), which funds research and supports the CF community.
“Because of BEF, I have been able to reach out to the CF community and try to reassure everyone who has been affected by this disease that CF isn’t the end of the world, if they don’t want it to be. That has been my main goal,” said Gunnar, who is currently studying at Boston College. “I want to try and have the most ‘normal’ college experience possible. I hope to graduate on time, and then potentially move on to post-graduate studies.” Given the improvements in life expectancy for patients with cystic fibrosis, all the family is optimistic. “I believe that we are experiencing something of a medical miracle now in cystic fibrosis research,” added Boomer Esiason. “I fully expect Gunnar to outlive me.”
8. Celine Dion’s niece Karine
Karine was the daughter of Liette and niece of Celine Dion, who died as a result of cystic fibrosis in 1993 when she was 16-years-old. She was diagnosed at birth with the disease and struggled through her childhood with it. Having witnessed the devastation of the disease in her family, Celine Dion became devoted to the fight against CF and she is currently the President of Honor of the Foundation against Cystic Fibrosis, she also supports the T.J. Martell Foundation and the Bottom Memorial of Princess Diana of Galls.
“I went near her,” told Céline. “She had slept so she had the strength to get up and I was behind her to trying to support her little body with my back because she was bent. She got up and she took my arm under her, I loosened her hair and I sang in her ear, and like that, the idea of Eddy’s song came to me: Les Oiseaux du Bonheur; I sang this song very quietly and quite slowly, I felt that her organs, one after the other, left us, because my body was very near to hers and I felt that they left us. I signed to my family who was on the edge, and for my mother (she shakes the head), while singing, everybody knew. Then I looked at my family and I continued to sing, she left slowly like that. I am so satisfied that I sang her a song before she left, and before she gave me this luck to accompany her, it is the most beautiful gift… ”
9. Laura Rothenberg
Laura Rothenberg was a student at Brown University and a patient with cystic fibrosis. What made her famous was a book she wrote titled “Breathing for a Living: A Memoir,” as well as a radio documentary called “My So-Called Lungs,” which aired on NPR August 5, 2002. Born in 1981, Laura was aware that she would die young, but she tried to have as normal a life as possible and she believed people did not see her as sick. She underwent a double lung transplant, but a year and a half later, the new lungs started to fail. Laura died in 2003 aged 21-years-old.
“I definitely think about after I’m gone. When I was younger, I used to try and plan my funeral, where I’d want it, how many people I’d want to be there, what it would be like. I’ve always been scared that people would forget about me. Eight years go by and, you know, someone who dies isn’t the first person you think of when you wake up necessarily. But I’ll find a way so that people won’t forget about me. You know, I’ll give friends things of mine that they’ll always have,” Laura Rothenberg wrote in one of the many audio diary entries she recorded over two years.
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