Tuesday, April 11, 2017

AKUH, KSDP collaborate to provide one-stop Health Solution for Down syndrome families in Pakistan

By Abdul Qadir Qureshi
(Pakistan News & Features Services)

The Aga Khan University Hospital (AKUH) has collaborated with the Karachi Down Syndrome Program (KDSP) to offer the first of its kind, ‘one stop health solution’ having made it easy for parents to bring their children to conveniently see different specialists at AKUH, in one clinic.

Up until now, parents in Pakistan would struggle to find the appropriately trained specialists to treat separate health challenges faced by their Down syndrome children, often fleeing from one hospital to another, and finding it’s all a wild goose chase. 

A team of internationally trained and experienced child specialists practicing at the AKUH, led by Dr Salman Kirmani and Dr Babar Hasan, joined forces with the world renowned Down syndrome expert, Dr Brain G. Skotko, as well as the founder of KSDP, Ali Allawala, and staff, to share best clinical practices for Down syndrome management at a session held in the AKU auditorium. 

This session was attended by medical professionals and students, Down syndrome parents and families as well as supporters of the cause. Speaking about the launch, Dr Salman commented: “The new Down syndrome Clinic at the AKUH became possible because of conversations with KDSP. We have been informally working with KDSP for three years, and now spreading the word so the medical community is aware and can guide these individuals to the Down syndrome clinics where all their healthcare needs can be met.” 

On the occasion, Ali Allawala said: “I am proud to see the formal launch of the Down Syndrome Clinic at the AKUH, which will not just give people with this condition the treatment they need, but also enhance the skill set of doctors responsible for their care.” 

While speaking live from Massachusetts General Hospital, Boston, on this occasion of the first Down Syndrome Clinic launch in Pakistan, Dr Brian Skotko observed: “According to a research study by the American School of Medical Genetics about self-perceptions from people with Down syndrome, about 99% expressed being happy with their lives”, and even though it is challenge and adjustment for families, 99% of the parents, and 97% of the siblings, love their child/sibling with Down syndrome.” 

Around the world, one child in every 1000 is born with Down syndrome. Down syndrome is a condition in which babies are born with extra genetic material from chromosome 21. At first many parents are in denial and then those that find acceptance and have the financial means, begin to seek help, only to find that resources in Pakistan are few and far between. 

The KSDP, officially launched in 2014, is run by parents for parents to provide a network of support, information and promote the acceptance of Down syndrome in society. 

Children born with Down syndrome are at increased risk of certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer’s disease, childhood leukemia, and thyroid conditions. 

The degree of these conditions varies greatly from child to child. However, many of these conditions are now treatable, and early medical intervention can help people with Down syndrome lead long and healthy lives.