Spina Bifida is a congenital( developed before birth) birth defect where there is an incomplete closure of the spinal cord during the development of the fetus. It may be concealed ( occulta), usually having little effect in early years; or it may be visible as a lump on the back (or neck), containing spinal fluid (meningocele), or both spinal fluid and spinal cord (myelomeningocele)
Whereas Hydrocephalus is a condition where there is an excess build-up of cerebrospinal fluid in the brain. Most babies born with Spinal Bifida get or have Hydrocephalus.
Spinal Bifida and Hydrocephalus separately or in combination are serious impairments affecting between two or three infants per thousand around the globe which often lead to death or severe lifelong disabilities. These conditions lead to coordination and mobility problems, bowels and bladder incontinence, bones and joint deformities, dislocation of the hip, changes in eyes.
25 October is a day that has been ordained and designated by the International Federal General Assembly purposely to raise awareness and indebt understanding of these two conditions and it is also a means to advocate and promote their rights.
With this years’ theme ” Unlock Your Right to Health”, we are reminded of article 25 of the United Nations Convention on the Rights of Persons with Disabilities(UNCRPD) which states” Persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination”.
Just as it is important that healthcare providers and professionals understand their obligations to the UNCPRD, it is also equally important for persons with SBH and their families to be aware of their rights according to this article in order to have early access to diagnosis, information, intervention, and multidisciplinary care.
Nothing About Us Without Us.