Living with OI is a life with responsibility of oneself with limited choices.
There is a serious lack of awareness of this disease among general population causing fewer support groups in the community for exchange of knowledge.
Today one in 10,000 people can be affected by OI with no apparent viable reason. Daily life is demanding for the patient as well as for the members of the family. The care needed for an OIer is like the care of a glass doll. Being cautious and making the home and work environment accident proof consciously at all times can be draining in the beginning but becomes more of a second nature over time. A gentle fall or slip could land the OI patient in cast for 6 weeks or more. Families with an OI patient learn to anticipate and plan lives on a daily basis avoiding potential hazards and make living and work places accident proof as much as possible.
While physical health is visible, the effects of mental, emotional and psychological well-being can have a huge bearing on the immediate members of the family. The sudden surge in the financial drain in the family also affects the members in many unexpected ways. Diagnosis of OI takes time when affected by a milder form. Family members are unaware of the reasons behind the recurring fractures. In more severe types, surviving through the neonatal period and into the adult life with multiple fractures is a long journey with much pain and drain. Most OI suffering individuals have short stature, limb and spine deformities.
Irrespective of the type or severity, having OI would mean restricted mobility and a huge amount of acceptance of many limitations for a lifetime.
While there is no cure for OI, there are treatments to contain the effects of the disease by following the strict precautionary lifestyle.
With the daily struggles, most people with OI persevere life with a passion to live it to the fullest! Along the way they achieve the unthinkable and establish themselves as productive community members portraying their strong resilience to minor setbacks and being role models for many.