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2 articles from the last 7 days matching "disease preparation"

AdvocacyRSS3 days ago

Riding the Absa Cape Epic With Pompe Disease: The Decision to Take on the Impossible

Bruce Campbell, who has Pompe disease, is competing in the Absa Cape Epic, one of the world's toughest mountain biking races. Despite living with a rare muscle disease that affects his strength and endurance, he decided to take on this extreme athletic challenge. His story shows how people with rare diseases can push their limits and achieve goals they set for themselves.

WHY IT MATTERSThis story demonstrates that people living with Pompe disease can maintain active lifestyles and pursue challenging physical goals, which may inspire patients to discuss realistic exercise options with their care team.
Good to knowPompe diseaseRead →
NewsRSS3 days ago

At 12, I Couldn’t Gain Weight With Pompe Disease, but at 35, I Struggle to Lose It

A person with Pompe disease shares how their weight challenges changed over time. As a child, they couldn't gain weight and stayed at 60 pounds. Now as an adult at 35 years old, they face the opposite problem and struggle to lose weight. This shows how Pompe disease can affect the body differently at different life stages.

WHY IT MATTERSThis personal account highlights how Pompe disease's metabolic effects evolve with age and treatment, which can help newly diagnosed patients and families understand what to expect as they grow older.
Good to knowPompe diseaseRead →

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