Dhanya Ravi lives with a rare disease, the physical symptoms of which have left her in fear of even the most mild of physical activity. Even a sneeze may cause fractures in her bones.
The disease in question is osteogenesis imperfecta (OI), also known as brittle bone disease. The condition is the result of a mutation in one of the two genes that carry instructions for making type 1 collagen. Collagen is a major component of bones and skin, granting strength and durability to the body’s connective tissue. As a result of the mutation, individuals with OI are highly prone to fractures within the bones.
These fractures can be caused by issues that a healthy individual would otherwise shrug off. Bumping the leg on the side of a table may be an irritating inconvenience to some. To those with OI, however, it could potentially leave them bedridden for a considerable amount of time due to the resultant fractures.
On International Wishbone Day, observed on May 6th, Ravi — fondly known as ‘India’s Glasswoman’ — spoke to The Better India. The Kerala native who now lives in Bengaluru discussed the mental impact of such a disease, all while retaining a cheerful attitude.
While the symptoms of OI are entirely physical, there is a mental impact that results from the condition. Ravi said that simply sneezing could cause her to fracture a bone. Both Ravi and her parents were impacted by the behavioural adjustments that needed to be made. She mentioned that, as a child, she would refrain from eating for fear of breaking her teeth. Such changes, particularly in children, could be devastating for their mental health.
Hospital visits were all too common an occurrence for Ravi in childhood due to the frequency of her injuries. “There are more fractures in my body than wounds,” she said Due to dental and eye deformities or respiratory issues, I became very familiar with hospitals at a very young age, and soon it became my second home.” she said.
The condition is rare, though does make media headlines from time to time. One such case saw two brothers both diagnosed with the condition following several fractures resulting from minor injuries.
The disease is incurable, and worsens with time as fractures accumulate. Typically, people with OI will be wheelchair-bound to limit the number of potential incidents where fractures may occur.
Awareness of the disease in India is limited, though efforts are being made to bring it to the public’s attention. Ravi operates a blog discussing her own personal experiences with the condition. Such efforts to expand awareness of rare conditions is vital to ensuring that those living with them can live a life with dignity and understanding, all the while facing the physical and emotional implications.