A 19-year-old Level 100 student at the University of Cape Coast (UCC), Enock Eshun, is battling a rare genetic disorder that has left him in a permanently stiff standing position for the past five years.
Eshun suffers from Fibrodysplasia Ossificans Progressiva (FOP), a progressive genetic condition that causes soft tissues to turn into bone, leading to severe movement restrictions. Diagnosed at age two, his condition worsened due to early reliance on herbal treatments by his family.
Fibrodysplasia Ossificans Progressiva (FOP) is a rare genetic disorder where soft tissues turn into bone, restricting movement. It’s caused by a mutation in the ACVR1 gene and worsens with injuries or medical procedures. A key sign at birth is malformed big toes.
There is no cure, and surgery worsens the condition. Treatment focuses on managing symptoms and preventing injury. Affecting 1 in 2 million people, FOP is one of the most disabling genetic diseases.
Speaking to Zion Felix, Eshun explained his condition took a critical turn in 2020 after experiencing severe pain following a rickshaw accident.
Despite his physical challenges, Eshun remains committed to his education. He made the difficult choice to remain standing rather than become wheelchair-bound, believing it would help him live a more independent life.
With this illness, if I fall and break my hand, it stays that way forever. I wanted to further my education, but I didn’t want to be in a wheelchair. Even walking, people stare at me—imagine if I were in a wheelchair. So I decided to stand, so when the condition worsens, it will block me in a standing position rather than sitting.
Eshun’s condition makes daily activities extremely difficult. He remains standing throughout lectures and only lies down at night in the same position. Additionally, he struggles to eat due to stiffness in his jaw, making feeding a major challenge.
Following the death of his father, he now relies solely on his mother for support. However, financial difficulties make it hard for him to access private transport and essential care.
Despite these challenges, Eshun remains determined to pursue his education and hopes for medical assistance to improve his quality of life.