The National Spina Bifida and Hydrocephalus Association of Uganda (SHAU) has appealed to government to come up with unique and specific interventions that favor people living with special conditions suffered by People Living with Spina Bifida and Hydrocephalus (SBH) condition.
The call was made during a media dialogue that was organized by the association to mark and celebrate the National Spina Bifida and Hydrocephalus day celebration held under the theme: “Claiming Rights in times of COVID-19”.
Speaking during the media engagement, SHAU Executive Director, Ruth Nalujja said that the emergence of COVID-19 situation has had a disproportionate burden on the lives of people with SBH in Uganda.
Nalujja said that notably, the lockdown response measures were essential to prevent the spread of COVID-19 but have made the situation difficult for children and adults with SBH to meet their daily basic needs, access heath care for chronic conditions and engage in meaningful home education and learning.
“Many families of children with SBH are experiencing extreme shortages of medical supplies and food; some children already registered complications because of poor feeding and delayed medical review,” Nalujja said.
Nalujja noted that it’s very unfortunate that during the lockdown period, the association lost a total of 8 children who died due to the SBH related illnesses and three were amputated and their health conditions deteriorated with less help.
SHAU boss thus appealed to all stakeholders to respond immediately to find applicable measures that would reduce the impact of COVID-19 situation on the lives of children and persons with SBH and their families.
“We appeal to the duty bearers including those in healthcare planning and provision sensitized on the obstacles and barriers to accessibility in and around healthcare facilities; national legislations and policies on healthcare strengthened,” Nalujja said.
She also demanded that healthcare coverage and affordability for persons with SBH be improved as part of universal approaches of healthcare.
During the same event, Dr. Michael Ogwal a medical officer at Cure Children’s Hospital noted that Spina Bifida is a birth defect in which a developing baby’s spinal cord fails to develop properly, this condition occurs when a developing baby’s spinal cord fails to close properly while in the womb.
Ogwal noted that the causes of the condition is not specific however, scientist think it may be a combination of the environment and a family history or lack of folic acid in the mother’s body.
On the other hand, Hydrocephalus is a build up of fluid in the cavities deep within the brain. The extra fluid puts pressure on the brain and can cause brain damage.
Dr. Ogwal thus advised all women that are in the age of giving birth to always consume foods that are rich in folic acids