Stone body syndrome! This rare disease causes muscles to slowly turn to stone
The stone body syndrome causes all the muscles in the body to slowly turn into stone. Do you want to know more about it? Read to know more!
New Delhi: Stone Man Syndrome, medically known as Fibrodysplasia Ossificans Progressiva (FOP), is one of the rarest and most debilitating genetic disorders in the world. It causes muscles, tendons, and ligaments to gradually turn into bone—effectively "locking" the body into place over time.
As the condition progresses, it severely restricts movement, eventually leading to complete immobility. There is no known cure, and surgery often worsens the condition by triggering more bone growth.
Stone body syndrome
FOP affects about 1 in 2 million people, and symptoms often begin in early childhood. One of the earliest signs is malformed big toes at birth, followed by painful flare-ups where soft tissues swell and harden.
One of the most widely documented cases is that of Ashley Kurpiel from the United States. Diagnosed as a toddler, Ashley has lived with FOP for over three decades. As a child, her arm was mistakenly amputated under the assumption that she had cancer.
Over the years, bone slowly grew across her body, limiting her movement. Today, she cannot raise her arms or bend her knees, yet she has become a motivational speaker and advocate for rare diseases, using social media to raise awareness about FOP.
What is the stone body syndrome?
Another case is that of Sajad Ahmad from Kashmir, India. Diagnosed in his teens, Sajad began experiencing stiffness in his neck and shoulders. Within a few years, he found himself unable to turn his head or lift his arms. The condition progressed rapidly, leaving him almost completely immobilised. Despite the physical limitations, Sajad’s spirit remains strong as he continues to hope for a medical breakthrough.
Scientists have identified the cause of FOP as a mutation in the ACVR1 gene, which wrongly triggers the body to grow bone in areas it shouldn’t. Any trauma to the body, including routine injections or falls, can accelerate the process.
Living with Stone Man Syndrome is like slowly turning into a statue—frozen not by choice but by an overzealous genetic script. While a cure remains elusive, ongoing research offers a glimmer of hope for those fighting to stay mobile and seen.