Celebration of World Spina Bifida and Hydrocephalus day
The World Spina Bifida and Hydrocephalus day is significant as it reminds the public and policy makers the reality about Spina Bifida and Hydrocephalus and the continuous advances in medicine, health care and preventive measures. The World Spina bifida and Hydrocephalus day was designated by World Health Organization in 2012 to be recognized by all partner countries on 25th October every year.
As a way of improving awareness on Spina bifida and Hydrocephalus Interdisciplinary Program (SHIP) in South/Western Uganda Region, ‘OURS’ in Collaboration with Children and Parents of Children with Spina bifida and Hydrocephalus organizes a function to celebrate the International Day for Spina bifida and Hydrocephalus every year.
Spine bifida is one of the most common birth defects one can be born with. It occurs within the first 28 days after conception during the formation of the neural tube. This leaves a gap in the spinal column in which one or more bones which form the back bone fail to close normally causing the damage of the spine and nerves. It is usually seen as a sac or a gap in the skin covering the spine at the lower back. The extent of disability depends on the location of lesion and Extent of nerve damage.
Hydrocephalus is sometimes referred to as “water in the brain”. This watery fluid is known as cerebrospinal fluid (CSF) which is produced continuously inside the ventricles in the brain and flows through its drainage pathways. The blockage drainage pathways cause an increase of pressure within the skull and on the surrounding tissues. As a result the head of the child will enlarge and if this pressure is longstanding, the Brain will be damaged as well.
‘OURS’ (Organised Useful Rehabilitation Service) is a community based rehabilitation program that empowers children with disabilities and their families to participate in society with an enhanced quality of life through provision of accessible, hollistic and affordable rehabilitation service. It was initiated by Ankole Diocese in 1995 at Ruharo Mission Hospital Grounds in Mbarara. OURS srvices are accessible to Children with disabilities from all over souths and western Uganda.
Since 2006 International Federation of Spina bifida and Hydrocephalus has been in partnership with ‘OURS’ to provide Interdisciplinary care services to Children with Spina bifida and Hydrocephalus in South/western Uganda. Through this partnership, we have developed a Frame work for long term interdisciplinary Services for children with Spina bifida and Hydrocephalus which is being implemented in south/western Uganda.
Currently OURS has 559 children with Spina bifida and 877 with Hydrocephalus undergoing long term interdisciplinary care services program with OURS.
GOD CARES Parents Support Group is an association of parents of children with Spina bifida and hydrocephalus from south/Western Uganda region. The group was started by the same parents in collaboration with OURS for PWDS in 2006 due to address the challenges they pass through after producing a child with this multiple disability. Today it has grown to over 800 members.
For more information, firstname.lastname@example.org or 0787368536.
Spina bifida/Hydrocephalus Program Coordinator