Imagine a bruise that never heals — instead, it hardens into bone. A small swelling that doesn’t fade but permanently locks a joint. For people living with Fibrodysplasia Ossificans Progressiva (FOP), often called Stone Man Syndrome, this is not a metaphor but a daily reality. One of the rarest genetic disorders in the world, FOP gradually transforms muscles, tendons, and ligaments into bone, creating what doctors describe as a “second skeleton” that traps the body from within.
“FOP is extremely rare and deeply disabling. Unlike most bone or muscle disorders that weaken tissues, FOP does the opposite — it creates excess bone in places where bone should never exist. And once that bone forms, it’s permanent,” says Dr Ravi Teja Rudra Raju, consultant orthopaedic surgeon at Apollo Hospitals, Financial District.
The condition is caused by a genetic mutation that disrupts the body’s normal bone-repair mechanism. “The body essentially mistakes soft-tissue injury for a fracture. So instead of healing muscle or ligament, it builds bone. This abnormal repair process happens again and again, slowly restricting movement,” explains Dr Aruna S Malipeddi, senior consultant – rheumatology at Arete Hospitals.
Though FOP is present from birth, it often goes unnoticed in infancy. One of the earliest warning signs is an unusual malformation of the big toes — shorter or bent inward — a clue that is frequently missed. Painful swellings, known as flare-ups, usually begin in early childhood, particularly around the neck, shoulders, or back, and later harden into bone.
Dr Ravi Teja notes, “Children may initially appear healthy. But with every flare-up, mobility reduces. Simple actions — turning the neck, raising an arm, bending down — gradually become difficult. Over time, patients must adapt how they sit, sleep, and move.”
Life with FOP becomes increasingly restrictive, both physically and emotionally. “The unpredictability is one of the hardest parts. A minor fall, an injection, even dental trauma can trigger new bone formation. That constant risk creates anxiety — not just for patients, but for entire families,” states Dr Aruna.
Misdiagnosis is another major challenge. Early swellings are often mistaken for tumours or infections, leading to biopsies or surgeries that unintentionally worsen the condition. “Surgical removal of extra bone is a dangerous myth. Any trauma can trigger even more bone growth,” cautions Dr Aruna.
There is currently no cure for FOP. Treatment focuses on symptom control, pain management, and preventing flare-ups. Gentle physiotherapy may help maintain existing movement, but aggressive stretching can be harmful. She explains, “With FOP, restraint is key. The goal is to protect mobility, not force it.”
Lifestyle adjustments often make the biggest difference — fall prevention at home, avoiding intramuscular injections, careful dental planning, and maintaining overall wellness. Nutrition plays a supportive role, helping patients avoid excess weight that can further strain mobility and breathing.
Equally important is emotional care. “Loss of independence can be deeply frustrating, especially for young patients. Psychological support, counselling, and peer communities help patients cope and stay socially engaged,” states Dr Ravi Teja.
Both doctors emphasise that awareness can dramatically change outcomes. “Many doctors may never encounter a case of FOP in their careers. But recognising early signs — especially the abnormal big toes — can prevent harmful interventions,” highlights Dr Aruna.
For those living with Stone Man Syndrome, early diagnosis doesn’t stop the disease, but it can slow its impact. “With the right precautions and support patients can still lead and pursue education, work, and meaningful lives — even within physical limits,” adds Dr Ravi Teja.
In a condition where the body slowly turns rigid, knowledge, caution, and compassion remain the strongest tools for preserving movement — and hope.