New members of the International OI Community in Pakistan!

New members of the International OI Community in Pakistan!

On Tuesday 25 November CLAN was proud to partner with colleagues and families at the National Institute of Child Health (NICH) in Karachi to celebrate the launch of Pakistan's first Osteogenesis Imperfecta (OI) Support Club.

With around 16 families gathering to share stories, experiences and questions, this was an important day for connecting and supporting. Families were introduced to efforts internationally to optimise quality of life for children living with OI, and in particular, the fantastic achievements of communities in Vietnam and Indonesia (FOSTEO!!) were communicated. 

Families listened attentively to lectures by Prof Jamal Raza (Director of NICH and a practicing Paediatric Endocrinologist); Assoc Prof Maria Craig (visiting Paediatric Endocrinologist from Children's Hospital Westmead, Australia); Dr Nasir (a Paediatric Surgeon at NICH who supports the OI Community when surgery is required) and Dr Kate Armstrong and Ms Catherine Cole (representatives of CLAN).

During question and answer time families were keen to learn more about fracture management and surgical options for those in need. There was a great deal of enthusiasm around coming together again in future as a Club, and indeed plans were made for Wishbone Day on 6 May 2015 to come together and celebrate in yellow!

The challenges for all poorer families caring for sick children in Karachi were driven home to CLAN during a tour of NICH. Pressing issues of access were immediately apparent: even early on a Saturday morning the busy outpatients department was in full swing. NICH manages around 150 – 200 patients a day in the surgical outpatients rooms and 350 – 400 in the general paediatric medical outpatients rooms.  The outpatients staff were hard at work treating as many patients as possible while families jostled, queued and waited in line patiently for their turn.  CLAN learned there can be up to three children in a bed at a time due to demand for inpatient care and lack of facilities (the hospital has around 475 inpatient beds but daily occupancy rates far exceed this). Even this brief tour emphasised for CLAN the vital importance of empowering families to maximize the quality and timeliness of in-home care so as to help improve quality of life and reduce the impact on in- and out-patient services at NICH.

CLAN shared with families the power of advocacy and connecting, and in particular the capacity of social media to help get their voices and stories out to the international OI Community, in hopes of furthering international connections and support. Families lined up to have their children's photos taken and shared internationally, and CLAN is proud to share these with the world.

Congratulations to NICH and all members of the OI Community of Pakistan on a great day - we know you will gather together again soon to celebrate Wishbone Day and we wish you every success for the future!

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