Shaun White has 3 Olympic gold medals, and singer Jessie J. performed during the 2012 Olympic Games’ closing ceremony. But these two have more than Olympic performances in common. Both were born with rare genetic heart conditions. And despite their diagnoses, these two have never let their heart conditions hold them back. The most common type of congenital disability, CHDs, is estimated to affect one in every 100 births.
February is American Heart Month
February is American Heart Month, a few weeks set aside each year to bring awareness to the leading cause of death worldwide. The World Health Organization (WHO) estimates that cardiovascular disease is responsible for taking 18 million lives globally each year.
Receiving a heart disease diagnosis at an early age can be a traumatic experience for the entire family. However, innovative therapies and scientific advances make it possible for many CHD patients to lead long, fulfilling, and even exciting lives like Shaun and Jessie.
Two Hearts, One Olympic Dream
Athlete Shaun White is an American professional snowboarder and skateboarder who holds 3 Olympic gold medals, the most held by a snowboarder. He also holds the record for the most gold medals at the X-Games and has 10 ESPY Awards.
White was born in 1986 with Tetralogy of Fallot (ToF) Heart Disease. This rare genetic condition is most often diagnosed at birth and is caused by four different heart defects. It often results in patients having blue-tinged skin due to the lack of oxygen flow to their body. White has undergone three open-heart surgeries, two of which occurred before his first birthday.
White is candid with the media, sharing his personal story and photos of the surgical scars on his chest to get the word out about his heart defect. He participates in fundraisers like the Los Angeles Congenital Heart Walk to raise money and awareness for CHDs. White hopes that by sharing his journey, he will inspire others living with CHDs to pursue their dreams and find happiness.
Jessie J. is an English singer-songwriter with many albums on the Top Ten list and an extensive collection of music industry awards. She is best known for her performance at the closing ceremony of the 2012 Olympic Games in London. Born in 1988, she was diagnosed with Wolff-Parkinson-White (WPW) syndrome at the age of 11.
A rapid heartbeat characterizes this rare genetic disorder. It is the result of an extra pathway between the heart’s upper and lower chambers.
This increase in pulse rate causes shortness of breath and dizziness, often occurring unexpectedly. At the age of 18, Jessie survived a minor stroke. She explains that she must exercise regularly to keep her heart in shape for the endurance needed for her musical and dance performances.
Jessie shares her journey with the media and has been the keynote speaker at fundraising events like the Delete Blood Cancer Gala in New York. She stresses the importance of focusing on one’s health and not being defined by a genetic condition.
The Right Formula for Success
Today, heart disease patients can participate in clinical trials to create better treatment options for their disease. These studies are often life-changing for them, as well as for others who share their condition. This crucial collaboration between clinical trial patients and pharmaceutical companies results in better outcomes and longer life expectancies for critically ill patients.
When diagnosed with severe heart disease at an early age, it can initially seem the illness will define the individual’s life moving forward. As both Shaun White and Jessie J. have proven, it is possible to chase, and even surpass, your dreams and aspirations. With the right formula of medical intervention, passion, and self-motivation, one can live an incredibly fulfilling life and inspire others with similar conditions.
Clincierge offers personalized one-on-one patient concierge services to those suffering from life-threatening illnesses. We understand the needs of the patient and offer travel and logistical services based on their preferences. Talk to us about managing the patient experience for your next clinical trial.
