DOHA, Qatar, Oct. 19, 2016 /PRNewswire/ -- In the spirit of collaboration and cross cultural support, Sidra Medical and Research Center welcomed the arrival of Pamela Block, Founder and Executive Director of the Association for Bladder Exstrophy Community (A-BE-C), and two young patients, who, this week, received life altering surgery thanks to the support of Qatar Foundation (QF).
Ms. Block spoke frankly about the challenges faced by young bladder exstrophy patients, revealing the personal obstacles, international challenges and the necessity of partnerships to treat the rare urological disease that affects 1 in 50,000 babies.
"I adopted my daughter, who suffers from bladder exstrophy, from China in 2009. By the age of four she had already undergone two failed surgeries in an attempt to reconstruct the complex urological structures and improperly formed pelvic bones she had been born with. Since then, I've made it my life's mission to develop a global support network with medical credibility. A-BE-C provides often hopeless parents around the world with the information, guidance and resources they need to seek treatment; but it's a huge challenge due to the level of specialisation."
Dr. Joao Luiz Pippi Salle, Division Chief of Pediatric Urology at Sidra, is one of just a handful of doctors with the expertise to carry out the lengthy operation. Dr. Salle treated the two patients, a 19-month old from Central Asia and a 17-month old from Ghana, after months of funding, legislation and organisation under Ms. Block's supervision.
Speaking about the life changing operations, Ms. Block outlined the significance of the clinical expertise available in Qatar, stating: "In the absence of accessible and competent health systems in their countries, patients suffering from bladder exstrophy experience an agonising, isolating and humiliating existence and are often marginalised in their communities. The un-paralleled healthcare in Qatar will help change these children's lives and give hope to their parents that their children will go on to lead happy, healthy and fulfilled lives."
Identifying Sidra among the few global centres capable of providing the necessary resources to carry out this complex surgery, Ms. Block stressed how the treatment of bladder exstrophy is heavily reliant on international collaboration.
"There's a growing need for medical centres worldwide to provide the best doctors and facilities to carry out this kind of complex surgery. It's essential we work with specialised hospitals and surgeons, and we are extremely fortunate to be assisted by the elite health professionals in Qatar whose actions will give these two children a chance of a normal life."
Speaking about her post surgery expectations, Ms. Block said: "The most important goal for the two surgeries is to preserve normal kidney function, develop adequate bladder function and promote urinary continence, providing the young children with a quality of life which other doctors told their parents was not possible."
After initial treatment for bladder exstrophy, the youngster's care will be ongoing and could potentially involve further surgeries, tests and procedures to ensure optimal results.
Aside from the surgery, Ms. Block also discussed the importance of creating awareness around the disease, including the mentorship of young Qatari doctors who will go on to be leaders in the field of medicine and urology. Ms. Block hopes that Sidra's collaboration with A-BE-C will further demonstrate the Middle East's international contribution in this field, serving as a hub of innovative medicine and cutting edge medical practices.
Reflecting on the partnership between A-BE-C and QF, Ms. Block stated: "I am immensely grateful to be in Doha with the children. Their treatments follow the 2015 collaboration between A-BE-C and the team in Qatar who successfully operated on a four-year-old from Pakistan, who underwent her first bladder exstrophy repair and pelvic osteotomy here in Doha."
With 59,000 hits on the A-BE-C website last year, there is undoubtedly a global need to provide healthcare for those suffering from bladder exstrophy. "We need organisations like Qatar Foundation, Sidra and Hamad Hospital to create a regional hub in the Middle East, so local patients can receive the very best treatment as close to their home country as possible."
Qatar Foundation – Unlocking Human Potential
Qatar Foundation for Education, Science, and Community Development (QF) is a private, non-profit organisation that is supporting Qatar on its journey from carbon economy to knowledge economy by unlocking human potential, for the benefit of not only Qatar, but the world. QF was co-founded in 1995 by His Highness Sheikh Hamad bin Khalifa Al Thani, the Father Amir, and Her Highness Sheikha Moza bint Nasser, Qatar Foundation's Chairperson. QF's work encompasses education, research and community development. World-class universities are brought to Qatar to help create an education sector in which young people can develop the attitudes and skills required for a knowledge economy. At the same time, QF builds Qatar's innovation and technology capacity by developing and commercialising solutions through key sciences. The Foundation also works to foster a progressive society while enhancing cultural life, protecting Qatar's heritage and addressing immediate social needs in the community
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SOURCE Qatar Foundation for Education, Science and Community Development