Wishbone day held at NICH
By Our Staff Reporter
2015-05-07
KARACHI: The National Institute of Child Health (NICH) on Wednesday observed International Wishbone Day, the international community awareness effort to raise awareness of osteogenesis imperfecta (OI), also known as brittle bone disease.
It is a genetic condition that causes bones to break easily. A person is born with OI and will have to live with the condition throughout their life.
The NICH organised the event for children suffering from the disease and their families at the facility hall featuring almost everything yellow from jerseys and caps to balloons that filled the hall to entertain the children.
The organisers said Wishbone Day would raise awareness of OI by acknowledging and celebrating individuals, families and community living with it. Wishbone Day celebrations are observed annually on May 6th.
`Everything here is yellow,` Dr Jamal Raza, the director of NICH, said and added that `as it shines with optimism and carries the promise of a positive future, your Wishbone Day yellow is a symbol of that promise.
The organisers said they wanted the world to know that life did not stop for people living with OI. `It just adds to the adventure! Because when we know better, we do better.
Dr Raza, in his presentation, spoke about a study at the NICH in which 40 patients childrenincluding 25 males and 15 females took part. All the patients were diagnosed on the basis of history of repeated spontaneous fractures and typical radiological findings.
He spoke of the role of bisphophonate, a medical method, in OI, which, according to him played a great deal in improving the condition of the patients.
He said he mean age of patients was 52.42 and 48.82 months for male and female; three patients lost to follow up and one patient died due to renal failure.
However, 26 patients completed one year of treatment and all of them showed cessation of bone pains, improved mobility, decrease in fracture rate and marked improvement.
`Bisphosphonate is used as treatment of all forms of osteogenesis imperfecta irrespective of severity of mutation or clinical phenotype. It is an effective therapeutic modality to increase the bone density, decrease fracture rate, increase mobility and improve quality of life,` said Dr Raza.
He said OI was a hereditary disorder or genetic disorder; a defect in synthesis of collagen, which is a protein which works like a cement partly responsible for bone strength and in presence of weak collagen the bone becomes weak and can easily break.
He said if there was a previous history of OI in either the mother`s or the father`s family, one probably had some idea what to expect and how to manage the disease.