By Julius Mugaga Tukacungurwa/Umoja Standard.
Kampala, Uganda: Advocates for the fight against Spina bifida and hydrocephalus worry of the expensive equipment to help people living with the condition in uganda adding to stigma within their spaces.
Spina bifida and hydrocephalus are prevalent congenital anomalies in Uganda, presenting 1 in every 1,000 live births.
By 2023, statistics showed that over 1500 children are born with Spina bifida each year and 2500 with hydrocephalus in Uganda.
Winfred Nabikolo the Patient Liaisons Officer at Spina bifida and Hyrocephalus of Uganda SHA-U said today ahead of World Spina bifida and Hydrocephalus Day that these underlying challenges have paralysed the intensity in fight this condition.
She said,some equipment like wheelchairs and others are highly taxed which makes attainment difficult there by crippling fighters efforts.
She expressed worries that some of the people living with the condition have serious issues like failure to hold waste and urine hence need for availability of pampers at all times which is not possible due to high tax on them. “This affects their esteem and education since they be uncomfortable at all times.”
Winfred noted concern of the fight against the condition largely funded by donors with uncertainty of the future if the the donor withdrew. “Ii call upon these government to highly fund this area because it needs serious attention if our fight will materialize.”‘ Said Winfred.
Efrance Nadongo, a young lady living with Spina bifida and hydrocephalus condition told this website that expressed disappointment with the transporters particularly who at several occasions stigmatize them by refusing to carry them code naming them of ‘bad-luck’ and in other instances, overcharge them.
“We face the same stigma in schools students don’t want to support us not even to associate with us claiming we’re charmed which make our Education difficult.”
“The equipment we use is expensive which make us lack thereby facing hard time. For my case we when I joined SHAU i got necessary help and am living but called for more attention.”‘
On the other hand she condemned parents who plant their children living with the condition on roads begging money for treatment saying ‘this is treatable and it’s free with many hospitals including Mulago offering the service.
Tomorrow 25th October, 2024 there will be free medical camp at Mulago Hospital featuring other more hospitals from different regions of Uganda offering a range of related services as part of celebrating the World Spina bifida and hydrocephalus Day 2024 and giving back to Ugandans with this condition.