MULAGO– Parents , health practitioners Civil society Actors and the general public , on Friday converged at Mulago Hospital to commemorate the World Spinabifida and Hydrocephalus day.
On addressing the gathering at this event, Dr. Rosemary Byanyima, the Executive Director of Mulago Hospital, reported that although they put in place a number of initiatives to treat and support children born with Spinabifida and Hydrocephalus complications, they still need a lot of support from both the government and other good Samaritans.
“Here at Mulago we have an orthopedic workshop which makes those system devices required by children with disabilities. We are not competing with Katalemwa as many may think, but we are complimenting each other.”
She added that availability of these devices, sensitization within communities and the support extended to parents have greatly contributed to the decline in the number of babies abandoned in Mulago.
“We urge Parliamentarians in their legislation work to, keep lobbying for more funding (to us) for these services like the orthopedic workshop. We need more modern equipment and resources for buying material and training more personnel to extend these services in all parts of the country.”
Phoebe Mutoni, the Board Chairperson for Spinabifida and Hydrocephalus Association of Uganda (SHAU) , called upon the government to rconsider waiver of 18 percent tax which was imposed on diapers, under the value added tax amendment act of 2024/2025. “ When you inpose tax on both locally and imported diapers, its imposing an additional financial burden to the families which are already facing significant changes.”
Mutoni also urged government to increase on funds allocated towards the treatment and rehabilitation services to people with disabilities. “The government should also recognize world Spinabifida day on the national calendar. It will not only foster awareness and reduce stigma, but it will also promote the rights and opportunities for Spinabifida and Hydrophaleous patients.” She added
Dr. Peter Senyonga, a neurosurgeon at Mulago Hospital , emphasized that comemorating the World Spinabifida and Hydrocephalus day is very important because it creates more awareness among the masses on top of giving courage to the those suffering from those complications.
“The biggest number of children with Hydrocephalus can be prevented , the other condition is spinabifida where children develop a defect In their spinal code and it doesn’t form properly. The main reason for that is lack of folic acid in the mothers before they conceive.”
He further commended the Executive Director of Mulago Hospital who supported the establishment of a neuro surgical out patient section which has greatly helped many patients suffering from Spinabifida and Hydrocephalus.
Statistics
It is said that Spina Bifida affects approximately 11.7% of 10 births in Uganda, followed by Hydrocephalus, impacting over 8,000 individuals annually.
At Mulago National Referral Hospital, they register around 10 to 12 cases of Spinabifida and at least four cases of hydrocephalus condition on a daily basis
However the key stakeholders asked government to think about conducting a fresh survey on people with Spinabifida and Hydrocephalus with a view of coming up with updated statistical data.
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