By Kabuye Ronald
In a spirited display of unity and awareness, the Spina Bifida and Hydrocephalus Association of Uganda (SHAU) led a procession through Kawempe and Kampala Central divisions on Thursday, promoting awareness of spina bifida and hydrocephalus ahead of the upcoming World Spina Bifida and Hydrocephalus Day on Friday, October 25, 2024.
The procession featured loudspeakers broadcasting information about these conditions, aimed at educating surrounding communities in preparation for the main celebrations, which will take place at Mulago Hospital.
Nabikolo Winfred, the Patient Liaison Officer at SHAU, emphasized the importance of the event, noting that a health camp will be held at Mulago, offering free services starting at 8 AM. The camp will include participation from various partners, including health experts, government officials, and representatives from institutions like CORSU Hospital and Katalemwa Cheshire Home among others.
Nabikolo also highlighted the significant financial burdens faced by individuals living with these conditions due to high taxes on essential assistive devices, such as wheelchairs, shunts, diapers, walking crutches and catheters. She called on the government to eliminate these taxes to improve access to necessary healthcare resources.
Nadonge Efrance, a young woman living with hydrocephalus and spina bifida, shared her personal experiences of discrimination and accessibility challenges, particularly regarding transportation. She expressed frustration over being treated as an outcast and facing abusive language from transporters, which often hinders her ability to attend appointments.
Additionally, Nadonge criticized parents who exploit children with these conditions by soliciting money in the streets, arguing that such practices exacerbate their health issues. She also urged for an end to discrimination in schools and workplaces, stressing that individuals with spina bifida and hydrocephalus deserve equal treatment and opportunities.
Hydrocephalus condition is the buildup of fluid in the cavities (ventricles) deep within the brain. The excess fluid increases the size of the ventricles and puts pressure on the brain. While Spina bifida condition is a birth defect in which an area of the spinal column doesn’t form properly, leaving a section of the spinal cord and spinal nerves exposed through an opening in the back. The best way to prevent spina bifida is to take folic acid supplements before and during pregnancy.
The upcoming World Spina Bifida and Hydrocephalus Day serves as a crucial platform to amplify these messages and promote the rights and health of those living with these conditions.
