Who are we?
Sheffield Association for Spina Bifida and Hydrocephalus (SHASBAH) supports everyone in the Sheffield postal district affected by Spina bifida and/or Hydrocephalus. Spina bifida is a neural tube condition. Hydrocephalus is a neurological condition caused by the pressure of too much cerebrospinal fluid in the brain. The effects of Spina bifida and Hydrocephalus include paralysis, mobility differences, incontinence, cerebral palsy, epilepsy, sensory and other neurological disorders.
SHASBAH was the first Association for Spina Bifida and Hydrocephalus (ASBAH) in the UK. We are a registered charity, formed in 1964 by a group of parents and medical professionals at the Sheffield Children’s Hospital. Local ASBAH groups later expanded into a whole network of associations under the national ASBAH, which went on to become Shine charity. SHASBAH still links up with our affiliated charities in Yorkshire to organise regional events, conferences and residentials for our members.
In January 2020, the SHASBAH team moved into our first ever base at Burton Street Foundation. We established many of our activities in the great facilities at Burton Street by the time COVID-19 struck. Our virtual base, our new website, was up an running by May 2020 to engage more with our members online, as well as raising our profile and expanding our reach.
SHASBAH now has over 150 members plus their families in the postal district across Sheffield, Rotherham, Barnsley, Chesterfield and Worksop. Our free membership has increased recently through several referrals from medical teams and charity networks.
What do we do?
SHASBAH provides befriending and welfare support to everyone in the Sheffield postal district affected by Spina bifida and Hydrocephalus. Our aim is to combat social isolation by arranging a wide range of group activities and events for all age groups. We regularly come together as a community for larger events such as seasonal parties, picnics, trips to local attractions and fund-raising activities.
We continue to work with medical teams at Sheffield hospitals to provide positive treatment experiences and awareness events. The connections between medical teams and our charity help to reach good health outcomes for our beneficiaries.
We also provide specialist advice and guidance on benefits, education and health needs on a 1:1 basis. This is based on our personal experience and connections with other experts in the local Sheffield area.
Our focus is always on helping our members to
get the most out of life.
What is spina bifida?
Spina bifida is a condition affecting the development of the spine of an unborn baby. The spine does not fully form over the spinal cord. This can lead to a spinal lesion and nerve damage. Spina bifida can be mild or can lead to severe movement difficulties and continence control issues. Some children, young people and adults maintain their physical independence yet may still have continence management concerns. Some serious forms of spina bifida can affect the development of the brain, due to the position of the spinal lesion.
What is hydrocephalus?
Hydrocephalus is caused by a build up of cerebrospinal fluid (CSF) in the brain. This build up of pressure can be caused by an infection, a genetic condition, a brain injury, a cyst, a tumour, some forms of spina bifida or an unknown cause. Hydrocephalus can lead to a series of procedures or operations. It can give some children, young people and adults many challenges and the impact on each person is unique. Families and professionals sometimes notice cognitive effects as well as communication, sensory, physical and social needs as a child develops.