Living with a bleeding disorder like hemophilia presents unique challenges. Whether you've been diagnosed with hemophilia A, hemophilia B, von Willebrand disease, or any other inherited bleeding disorder, the impact on mental health can be significant, especially if you feel isolated. It’s easy to feel depressed or anxious when you believe you're facing these challenges alone.
However, knowing that successful and famous individuals also live with hemophilia can be reassuring. It helps you realize that hemophilia is just one aspect of your identity and doesn't define who you are or what you can achieve in life. Moreover, these celebrities often use their platforms to advocate for hemophilia awareness, helping others understand the condition and inspiring those affected to thrive.
Alex Dowsett is a professional cyclist from Great Britain. He has won the British National Time Trial Championships six times and once held the UCI Hour Record, meaning he cycled farther in one hour than anyone else at the time. Dowsett also claimed victory in two stages of the prestigious Giro d’Italia. He is the only known elite athlete with hemophilia.
Dowsett was diagnosed with severe hemophilia A when he was just 18 months old, a surprise to his parents since there was no family history of the condition. Despite the diagnosis, his parents encouraged him to lead an active life. As a child, he swam competitively, sailed, and played basketball, eventually focusing on cycling as a teenager. Dowsett has said that his hemophilia influenced his choice of sport, as more traditional contact sports were less feasible for him.
To support young athletes with hemophilia, Dowsett founded the charity Little Bleeders, which helps cover the costs of sports participation and development for children diagnosed with the condition.
Ryan White became famous not just for his hemophilia, but for his struggle with AIDS, which he contracted through a contaminated blood transfusion. This was a common risk for people with hemophilia during the 1970s and 1980s. White was diagnosed with AIDS in December 1984, resulting from injection of factor VIII, a blood clotting factor, that had been contaminated with HIV.
At that time, there was widespread fear and misunderstanding about the disease, and White had to fight in court to continue attending school in his hometown in Indiana. His case became a national story, and in 1987, his family moved to a more welcoming community. The principal of his new school welcomed him, shaking his hand and encouraging people in the area to educate themselves about HIV/AIDS.
White’s story was later adapted into a television movie, and he met many celebrities during his short life. He died of AIDS in April 1990 at the age of 18. Many mourned him, and the U.S. Health Resources & Services Administration’s HIV/AIDS program is now named after him.
Although White’s fame is more closely associated with his experience with AIDS, his story also raises awareness about the dangers people with hemophilia faced at the time due to inadequate blood safety measures.
Richard Burton was well-known for his Shakespearean roles and his high-profile relationships with Elizabeth Taylor. Throughout his career, he starred in 61 films and 30 plays, earning seven Academy Award nominations and winning two Golden Globes. Burton was the first Hollywood star to publicly reveal he had hemophilia.
Burton was the son of a coal miner, and his mother died when he was only two years old. While it’s unclear when he was diagnosed with hemophilia, his early life of hardship and poverty suggests that managing the condition would have been challenging.
Burton attended Oxford University on a scholarship and joined the British Royal Air Force during World War II. Afterward, he focused on his acting career. This is what eventually made him famous. He had roles in films including “The Robe,” “My Cousin Rachel,” and “Alexander the Great.”
Burton met Taylor while working on “Cleopatra,” and they went on to get married twice. He continued to work on both the stage and the screen until his death in 1984 from a brain hemorrhage. It’s unclear if hemophilia played a role.
Though Burton rarely discussed his hemophilia publicly, he and Taylor, in 1964, established the Richard Burton Haemophilia Fund, for which they raised hundreds of thousands of dollars. He also pledged all of the proceeds from the 1969 premiere of “Where Eagles Dare” to hemophilia research, raising significant funds and awareness for the cause.
Alex Borstein is an Emmy-award winning American actor, writer, and producer. She is best known for voicing Lois Griffin on “Family Guy” and her role as Susie Myerson in the comedy series “The Marvelous Mrs. Maisel.” Borstein is a carrier of hemophilia, as is her daughter. Her brother and uncle are both diagnosed with hemophilia.
Borstein worked extensively as a spokesperson for the National Hemophilia Foundation, using her platform to raise awareness about VWD, which affects up to 2 percent of the U.S. population. Her personal connection to hemophilia motivates her advocacy, particularly for women and girls who are often overlooked in discussions about these conditions.
Bleeding disorders like hemophilia can affect every area of your life. If you’re struggling or you feel like your hemophilia treatments aren’t effective, talk to your health care provider today. They can help you find what you need to improve your quality of life and overall sense of well-being.
MyHemophiliaTeam is the social network for people with hemophilia and their loved ones. On MyHemophiliaTeam, more than 6,600 members come together to ask questions, give advice, and share their stories with others who understand life with hemophilia.
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