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How a ‘hidden heritage’ is helping modern day families

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Two events coming to Brighton this month will showcase medical conditions that affect thousands of people and have been around for centuries, yet remain little known today.

The Spina Bifida and Hydrocephalus: Our Heritage exhibition will be on display at the Jury’s Inn Hotel, 101 Stroudley Rd, Brighton BN1 4DJ on Monday 20th March.

Organised by the charity Shine, with funding by the Heritage Lottery Fund, the free exhibition will be open to the public from 2.30-4.30pm and showcase the early history, developments in support and treatment, and changing attitudes towards these life-threatening conditions over the decades. The event will be opened at 2pm by local Shine member, Rev Nicholas Fincham, who has personal experience of hydrocephalus.

Thanks to medical advances, survival rates with spina bifida and hydrocephalus are increasing, with many people living well into their 50s and beyond. This is bringing new challenges with age and the Shine40Plus conference on Tuesday 20th March, attended by 70 delegates, many with personal experience, will explore ways to help – including coping with anxiety and depression, the benefits of exercise and nutrition, and tips for daily living.

Spina bifida arises when the spinal cord and surrounding bones do not close fully during a baby’s development in the womb. This can lead to paralysis and problems with continence, walking and coordination. Many babies born with spina bifida also develop hydrocephalus – a harmful build-up of fluid around the brain - which can seriously affect a child’s development and ability to cope with everyday life.

Thousands of families are affected by these disabilities - Shine has 11,500 members, including 340 in Sussex. Shine’s specialist team provide advice, information, training and support to help families cope with the challenges. Yet some people may have spina bifida and not know it - a rarer form (occulta) may not be detected until another problem arises in adulthood such as injury or back pain - while hydrocephalus can occur at any age, for example, following brain injury or illness. 

The Heritage event will also highlight the vital role of folic acid, shown to reduce the risk of developing neural tube defects when taken at least three months prior to and post conception, a message the charity are urging the public and the government to act upon. 

Mandatory fortification of products such as bread and flour has been shown to reduce the risk of NTDs in more than 70 countries worldwide, but despite repeated calls from charities and disability groups, the government in England has refused to take action. Lord Rooker’s private members’ bill, calling for fortification, will again debate the issue on 24th March.

The Shine40Plus Conference has been very kindly sponsored by Bullens, Coloplast UK, MacGregor Healthcare and Possability People.

During the conference, Dr Trudi Edginton, Clinical Psychologist and Senior Lecturer Neuroscience, University of Westminster, will present on aiding memory and planning, while Professor Tom Solomon, Head of the Institute of Infection and Global Health, University of Liverpool, will lead a session about Roald Dahl’s fascination with and contribution to medical world, based on his new book: Roald Dahl’s Marvellous Medicine. Dahl developed a shunt valve – on display as part of Heritage – used to treat thousands of children with hydrocephalus.  He and Tom became firm friends when Tom treated Roald towards the end of his life.

Heritage, enabled by a £60,000 grant from the Heritage Lottery Fund, will be travelling the country and from Brighton will move on to Nottingham Medical School. Contact val.stokes@shinecharity.org.uk or T: 01733 421356 to book the exhibition.


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