Life With Challenges

When life challenges go far beyond Pompe disease

Have you missed me since October? Did you wonder if something Pompe-related had happened to me? Did I get lost “on the road to Pompe,” or did my engine break down somewhere? Truth be told, I got lost in a bank of fog and didn’t know when it…

World’s First Alport Stamp Is Macedonian Mom’s Latest Win for Rare Disease Patients

It wasn’t until Gordana Loleska’s son David was 14 years old that doctors in their native North Macedonia diagnosed his kidney, vision, and hearing problems as Alport syndrome. Although she had known for years that something was wrong, the news that David would battle a lifelong rare disease devastated…