Meet Umar, a twenty-eight year old graphic designer living in Lahore, Pakistan, who doesn’t let his disability dictate his life. Ever since birth, Umar has suffered from a disease known as Osteogenesis Imperfecta, which is a genetic bone disorder resulting in soft bones that break easily and do not form normally.
Osteogenesis imperfecta affects roughly 1 in every 16,000 to 20,000 people, and there are an estimated 20,000 to 50,000 people in the United States living with this disorder.
Typically, a person living with a similar stage of osteogenesis imperfecta as Umar cannot live completely independently and often requires a caretaker on a daily basis.
While it impacts many aspects of his life, this condition does not affect fertility, so Umar can still have children. There is currently no cure for osteogenesis imperfecta, so those suffering from this disease must live their entire life with it.
In his society, people believe that such disabled people like Umar are not able to do anything, and they are a burden on their families. He says that his mother was the real everyday hero, because she raised him to believe that he is no less than any other man. Umar’s mother brought him up as a normal human being and taught him that he is not like everyone else in appearance, but that he is a better person than them.
Umar can work to improve his condition by going through daily physical therapy, whether through visiting a therapist’s facility or having one visit him at home. The hospitals providing these facilities are approximately 40 kilometers (25 miles) away from his home, which would be difficult for Umar to travel every day.
Additionally, he cannot yet afford to pay for a physical therapy home service, so Umar is currently trying to do the therapy by himself, but he is struggling to do so.
How often do bones break with Osteogenesis Imperfecta?
As a child, Umar’s bones were very brittle, and this caused frequent and multiple fractures while growing up, mostly occurring in his arms and legs. Every time one of his bones would break, his family would take him to a Jirrah (traditional Pakistani expert of joints and bones) instead of a qualified surgeon.
As a result, his fractures were not treated properly, and his bones became deformed and not aligned correctly. This is why he has small thighs, weakness in his lower body, increased size of his ribcage, scoliosis in his spine and rounded shoulders. His height is much shorter than an average osteogenesis imperfecta patient and his lower body does not have enough strength to lift his own weight.
