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The Stone Man's Disease

Fibrodysplasia ossificans progressiva (FOP), is a rare disabling disorder that can gradually cause the body's soft tissues to turn into bone.

By Eman Irfan / Edited by Jaysukh Singh

Updated October 7, 2023

The Stone Man's disease, also called fibrodysplasia ossificans progressiva (FOP), is a rare disabling disorder that can gradually cause the body's soft tissues to turn into bone, a process known as heterotopic ossification. It is a potentially life-threatening disease that leads to a critical decline in an individual's mobility and functioning. Heterotopic ossification results from a genetic mutation, causing the overexpression of the gene ACVR1. Ultimately, it results in irregular bone growth in soft tissues such as the tendons and muscles. This overstimulation can consequently lead to severe disability.

The initial diagnosis for FOP commonly occurs during childhood, where the appearance of bony lumps around the back, neck, and limbs can be used as indicators of the condition. These nodules can eventually fuse, causing a broader spectrum of complications such as difficulty in breathing, consumption of food while swallowing, and a compromised immune system with an elevated risk of infection.

The disease is uncommon, with an estimated 1 in 2 million persons worldwide suffering from FOP. The infrequent occurrence of the following disorder is a significant reason a successful treatment to eradicate this ailment has not yet been identified. In most cases, medical workers are unfamiliar with the disease, which can lead to late diagnosis and mismanagement. However, with the global revolution in research and technology, medicines to help condense the emergence of crucial symptoms and prevent loss of life have been developed. Treatments might range from surgery to rectify abnormalities to physical therapy and medicines for supported movement and controlled inflammation.

Dr. Fredrick Kaplan and Dr. Eileen Shore have dedicated their careers to research and development against FOP, specifically to find a cure.

Their knowledgeable assistance helped identify the genetic mutation responsible for this ailment's rise, acting as a breakthrough in the early 2000s.

Harry Eastlake is amongst a handful of the prominent identities known to have fought against the grave disease. He was a Native American born in the 1930s, recognized for his love for music and art. He was diagnosed with FOP at the age of ten, and continued to fight a tense battle for three decades before he passed away in 1973. His soft tissues had converted to bone, causing difficulty in daily activities such as dressing and eating. Despite these physical limitations, Harry was always admired for his positive attitude and personality. After his death, his body was donated to a museum in Philadelphia, where it continues to set an example for the impact of FOP.. His narrative of a lifelong war against the threatening malady has strongly encouraged individuals around the globe to raise awareness relative to the disorder and other rare disabilities.

This thin-on-ground disease has attracted the attention of prominent researchers who have come together to ensure a permanent cure and provide ease against this devastating condition.