Stone Man Disease: The Rare Condition Causing a SECOND Skeleton (FOP Explained)

14 days ago
15

Stone Man Disease (Fibrodysplasia Ossificans Progressiva or FOP) is a rare and devastating condition that causes the body to grow a second skeleton, turning soft tissues and muscles into bone. This condition results in immobility, and patients face the terrifying prospect of becoming completely trapped in their own bodies as they develop a "second skeleton" over time.

🔬 Key Insights in This Video:

What is Stone Man Disease? Learn how the condition fibrodysplasia ossificans progressiva (FOP) is caused by a mutation in the ACVR1 gene, leading to abnormal bone growth in places it shouldn’t form.
Rare and Mysterious: FOP is extremely rare, affecting approximately 1 in 1 million people worldwide. It is not influenced by ethnicity or gender.
Symptoms and Early Warning Signs: From malformed toes and thumbs to the gradual stiffening of muscles, FOP symptoms are difficult to detect but devastating once they begin.
Flare-Ups & Trauma Triggers: Discover how FOP flare-ups occur, and how minor trauma like an injury, surgery, or even a viral infection can accelerate the condition.
Impact on Quality of Life: The progression of FOP can cause severe spinal deformity, difficulty speaking, eating, and even hearing loss.
🔍 What We Explore:

Genetic Mutation: How the ACVR1 gene mutation triggers abnormal bone growth and how it affects skeletal development.
Treatment and Research: Current progress in finding treatments for FOP, as well as genetic research aimed at managing the disease.
Support and Awareness: Understanding the importance of support for rare diseases and increasing awareness of the struggles faced by people with Stone Man Disease.
👉 This video breaks down everything you need to know about Fibrodysplasia Ossificans Progressiva, including genetic causes, the symptoms of FOP, and its impact on the quality of life of those affected. Plus, learn about the most promising avenues of genetic research and treatment for this rare disorder.
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