I’m Molly, the mother of a child with Legg-Calve-Perthes disease. Like most, I didn’t know anything about this disease until that fateful day my son was diagnosed. When I turned to Google to learn more, I found loads of literature about the condition, but little about life with it. I want to change that by shedding light on the emotional and logistical complexities we overcame in our journey.
Perthes treatment typically involves activity restriction. Some children will also require surgery and leg casting/bracing. Each poses unique challenges. In this section, I will share how our family prepared for success and overcame the trials involved with treatment.
In this section, I will share my family's candid personal experience navigating this disease. What you and your family are feeling–and the magnitude of those feelings–is not exaggerated or shameful. You’re not alone. And what you’re feeling is normal.
This rare disease is extremely complicated to understand and explain with “stages” and unknown origin. However, my favorite overview is the Boston Children’s Hospital writeup I've linked below. It’s where I send anyone for the quick and straightforward description of this complex disease.