A Musician's Life Turned Upside Down

At just 36 years old, Yeo Wee Chong was an avid bass clarinet player in a concert band, until a life-altering diagnosis of Pompe disease at the age of 29 changed everything.

What is Pompe Disease?

Pompe disease is a rare genetic disorder that can lead to severe respiratory complications due to the progressive weakening of muscles, especially the diaphragm. This condition results from the lack of the enzyme acid alpha-glucosidase (GAA), essential for breaking down glycogen. When this enzyme is deficient, glycogen accumulates in muscles and organs, causing debilitating muscle weakness and mobility issues.

From the ICU to Reassessing Dreams

Yeo's health took a dramatic turn one day when extreme fatigue forced him to seek emergency medical help. After weeks of tests in the ICU, doctors confirmed his diagnosis. "It was a jarring moment, realizing I might never play my beloved bass clarinet again," he reflected. The diagnosis deeply affected his identity and social life, but Yeo chose to accept his circumstances and focus on managing his health.

Understanding the Severity of the Condition

Pompe disease's severity varies; it’s categorized into infantile and late-onset forms. Infants often show symptoms early on and can face life-threatening complications, while adults, like Yeo, experience a gradual decline, often beginning as late as their 60s. Symptoms can include increased fatigue, shortness of breath, and mobility challenges, though adult patients typically avoid severe heart issues associated with the disease.

A Lifeline of Medical Support

To manage his condition, Yeo’s healthcare team prescribed a Bi-PAP machine to assist his breathing during sleep. He recalls the ICU phase as the most challenging, as he fought to strengthen his respiratory function. The constant fear of needing a tracheostomy—a surgical procedure to help with breathing—haunted him during those critical days.

The Financial Burden and Hope Ahead

Living with Pompe disease is not just physically demanding; it’s also financially taxing. Yeo requires bi-weekly enzyme replacement therapy that costs a staggering $55,000 monthly. Thankfully, the Rare Disease Fund (RDF) now covers most of his medical expenses, which has been a tremendous relief, allowing him to focus on his treatment and well-being rather than the financial strain.

Resilience Through Music

Despite these hurdles, Yeo has fought hard and is gradually regaining his strength. He has been able to perform with his band again since 2023, a testament to his resilience and determination. "Playing music is not just a passion; it’s a part of who I am," he asserts, inspiring others to see beyond obstacles and keep pursuing their dreams.