Osteogenesis imperfecta is a rare genetic disorder. However, it affects the lives of people living with it in a multi-faceted way. Also known as the ‘brittle-bone disorder’, the type-1 collagen, which is a part of the human bone structure, often becomes abnormal in people with OI. We recently interviewed Dr. Prashanth Inna and Archana Ravindra to understand more about Osteogenesis imperfecta.
Dr. Inna is a practicing Paediatric Orthopaedic Surgeon who wanted to help out patients in aspects that go beyond just medical aid. Archana suffered her first fracture when she was only 27 days old; this was followed by multiple fractures over the next couple of years, which was then diagnosed as Osteogenesis imperfecta. This is a genetic disorder which varies in intensity and is categorised as Type 1, Type 2, Type 3 and Type 4. Type 1 and 4 are milder variants, where people have a slight weakness in the bones. Type 3 characterises multiple fractures, which often makes people with Osteogenesis become wheelchair users as their mobility and independence are deemed limited. Type 2 is the most severe variant and is potentially fatal.
For Archana, who had had 4 fractures by the time she was diagnosed, the journey of managing the condition began at the age of four. Her father went to a local newspaper and got her story published, which enabled people with knowledge about the condition to come up and help her. Over the years, she has received proper medical attention and care from friends and family, helping her cope very well. Some people have even come to see her out of curiosity since it was being said that she has “glass-bones”.
Dr. Inna says that advancements in medical treatment and medication have reached new heights today, along with the rise of alternative therapies like Hydrotherapy and Yoga. The team also marks Wishbone Day on May 6th to create advocacy about Osteogenesis imperfecta.
Wishbone Day is a social movement organised by people with OI.
(Know more: http://www.wishboneday.com/p/about.html)
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