PRIMA

The Minister of State for Disability Affairs, Hon. Asamo Hellen Grace has said that the lack of awareness on Spina Bifida and Hydrocephalus is the major challenge hindering the patients with these complications in the country from living a normal life.

Hon. Asamo also condemned the exploitation of people with these complications, used mostly as part of the street begging scheme, urging the parents and guardians to help them get the medical attention they need.

According to the Disability Affairs minister, in Uganda, 6,000 patients per year are recorded to have Spina Bifida and Hydrocephalus, but only 1000 are attended to, with the condition being recorded more in the western and central parts of the country.

Spina Bifida alias split spine is a birth defect in which a developing baby's spinal cord fails to develop or close properly while in the womb. on the other hand, Hydrocephalus, also called water on the brain, is a state in which fluid builds up in the cavities deep within the brain, putting it under pressure and causing brain damage. It is most common in infants and older adults as Dr. Noah Matagala A neurosurgeon from Mulago Hospital explains.

It is noted that the country only has a number of 12 medics who can attend to these patients, with three medical centres: Comprehensive Rehabilitation Services in Uganda (CoRSU) in Mbale, Mulago and Mbarara referral hospitals, providing the services sought.

The Minister of State for Disability Affairs, Hon. Asamo Hellen Grace, went on to mention the challenges these categories of people face in the community.

Asamo also condemns the use of such patients, especially in street begging schemes by their parents/guardians for their own personal gains, saying they should instead take their children to get the help they need from hospitals for better living.

Dr. Matagala further advocated for prevention rather than cure of Spina Bifida and Hydrocephalus, calling on women to consume more folic acid ahead of conception, as a preventive measure.

Early this year, legislators approved a tax on diapers and rejected a proposal to exempt payment of taxes on adult diapers.

However, this affects the affordability of the essentials to people with Spina Bifida and Hydrocephalus whose bodies may fail to hold their stools.

The Executive Director of the Safety and Health Association of Uganda (SHAU), Ruth Nalugya called on the government to remove the tax put on the products to ease access.

Spina bifida is a significant public health concern in Uganda. It is estimated that 11.7% in 10,000 live births in the country are affected by this condition.

Spina bifida often leads to lifelong physical and cognitive disabilities, including the co-occurring condition known as hydrocephalus, which affects the accumulation and circulation of cerebrospinal fluid in the brain.

It is noted that a person with Spina Bifida and Hydrocephalus may need an average of 6.5 m to get treatment.

The country will take part in the commemoration of the World Day for Spina Bifida and Hydrocephalus tomorrow, 25th October, 2023 under the Theme, “Accessibility for all: empowering lives, and embracing differences”.