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, Chopin weighed less than 45 kg 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 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.'”
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