Media attendance at Wishbone Day saves the lives of children with OI in Pakistan!

NICH, Karachi

Report by Dr Yasir Khan

National Institute of Child Health, Karachi, Pakistan

This year the National Institute of Child Health (NICH) partnered with CLAN (Caring & Living as Neighbours) on 6 May 2015 to commemorate Wishbone Day, an International Awareness Day for Osteogenesis Imperfecta (OI).

The event was attended by 25 families of patients with OI, our endocrine team, media reporters and a representative from the Australian Embassy. NICH and CLAN would like to sincerely thank Australia's Consul to Karachi, Mr Farrukh Ikram for his involvement in this special day - it was a huge morale boost for families, staff and CLAN alike to have Australia's strong support for children living with OI in Pakistan! 

Cake cutting WBD

There are very few treatment options available for OI patients in a developing country like Pakistan. OI in Pakistan is mostly misdiagnosed and mismanaged. There are few tertiary centers that provide OI patients with the latest treatment options available, that are freely available for OI patients belonging to other developed countries.

Since OI is a genetic disease only possible curative treatment is gene therapy which is presently in experimental stages. New medical and surgical management strategies are being emerging every day to help make the lives of patients suffering from easier so that they may function and perform everyday tasks like normal individuals.

Presently NICH is offering up-to-date treatment strategies for patients registered in our outpatient department. This includes intravenous Injection Zoledronate and Fassier-Duval telescopic rods.

Zoledronate is a bisphosphonate which increases the bone density of OI patients therefore remarkably decreasing the incidence of bone fractures.

Fassier-Duval telescopic rods are revolutionary rods which are implanted during surgery and help in straightening the leg bones of these patients.

We presently have over 60 patients registered with us and these up-to date revolutionary management strategies are offered to all our patients free of charge.

This year for the first time in Pakistan we united with OI patients from all over the world to celebrate Wishbone Day. We were part of the International Wishbone Day Celebrations on facebook and twitter.

The target of Wishbone Day is to create awareness of OI for health care professionals and the general public alike that OI is a manageable non-communicable disease and latest treatment is available in a developing country like Pakistan.

WBD 2015

The color yellow has been chosen internationally because yellow is the color or promise and hope. Yellow shines the brightest even when there is little light and where there is hope there is always a way forward.  

Dr. Jamal presentation consisted of updated treatment options that are now available at NICH. Dr. Nasir showed the success his team has achieved with the locally manufactured Frasier-Duval Telescopic Rods. Dr. Mohsina presented the importance of Wishbone Day for the patients.

The highlight of the day was a talent show by OI kids. Kids were given freedom to present what they wanted. In the end all kids sang the National Anthem together.

The patients and families appreciated the efforts of our endocrine team in organizing the event. They welcomed the fact that general awareness was being created about OI and the world was learning about the challenges they faced in day to day life.

Surprisingly in the very next OPD a new patient previously undiagnosed visited us. The parents had seen the TV report on wishbone day and were concerned that their child might have OI. The patient had 2 previous operations for fractures but had remained undiagnosed by the Orthopedic Surgeon.

By carrying out this annual event at NICH we brought the message of goodness and wellbeing attached with Wishbone Day internationally to the patients of Pakistan. Like OI patients all over the globe, our patients will also learn that hope is not lost and they are not alone. We believe many more children living with OI in Pakistan will find their way to the OI Community of Pakistan and a stronger, healthier future!

Thank you so much to all involved for your amazing efforts. Now patients from Pakistan are part of the International OI Community!