Hydrocephalus is a somewhat rare condition that causes a build-up of fluids in the brain, causing enlargement of the head and other adverse effects. The condition is commonly presented in infants and the elderly.
According to clinical research, the disease can be precluded because it streams from folic acid deficiency and lack of a proper diet during the pre-natal days of a mother that causes genetic disorders in the development of the brain.
Hydrocephalus weakens and cripples most of its victims, many never see their first birthday. And those that survive end up confined to wheelchairs and experience difficulty in bowel movement and as well lose sensation.
In Uganda, treatment and management of hydrocephalus and related conditions such as Spina Bifida are limited to only Cure Children’s Hospital located in Mbale. The one hospital has specialists that provide care and treatment of the disease, the hospital has trained parents and caregivers with skills to harness to care for patients.
However, several NGO-owned rehabilitation centers have cropped up across the country in a bid to tackle the problem, support families and children living with hydrocephalus, create awareness of the disorder, but a lot still needs to be done.
According to the Hydrocephalus and Spina Bifida Initiative (HSI), Patience Mbabazi intimated to Gateway News, that most of the children under their care come from broken homes, single mothers since the stigma and discrimination amongst societies is still intense and thus the need to create awareness.
“Together with our friends of Gals Forum International (GAFI) decided to dedicated the 16 days of Activism against gender based violence to creating awareness for our children and mothers. Most of the mothers and children under HSI have been victims of violence, deserve a fresh start,” Mbabazi said.
“Through GAFI under the leadership of Esther Namboka, we have been able to receive a donation worth UGX 15 million from Grand Lisboa Casino. The monies are to help start up an income-generating business to sustain our children and mothers. Taking care of a child with hydrocephalus is very expensive, feeding, sanitary effects, transportation and special needs schools.” Mbabazi added.
“We have knocked on several doors, but only a few have responded to the cause, the disease can be avoided, all mothers should know. Now that we have Children that require a hand to elevate their living.” Mbabazi noted.
Esther Namboka revealed that GAFI will be working with HSI to create awareness and see that government and the general public join the fight against stigma and discrimination of persons affected by the disease.
“It is upon us to support families and children living with the disease, for so long the education sector has not provided inclusive strategies. There we need to push for inclusive policies and ensure that these youngsters are able to attain proper education and as well lead a life like any other person,” Namboka said.