National Doodle Day raises money for Epilepsy Action and The Neurofibromatosis Association.
Around 456,000 people in the UK have epilepsy – a neurological condition that causes seizures through a temporary disruption to normal brain function. Epileptic seizures can sometimes be controlled but if not, or at times when someone has not found the right medication or dosage, seizures can greatly impair people’s lives.
Epilepsy Action is a member-led charity offering free support and information to anyone living with epilepsy, their friends, families and the professional that care for them. Epilepsy Action supports people with epilepsy and campaigns for greater care and awareness, we do so in the following ways;
Our advice and information officers answer around 20,000 queries every year. The calls, letters and emails are answered by our epilepsy services department every day. They advise people with epilepsy, their families, employers, teachers and anyone with a query on any aspects of epilepsy from diagnosis and medication through to pregnancy and the menopause. As well as answering queries personally, our website had over 1.5 million visits.
Epilepsy Action places specialist epilepsy nurses in the NHS and we then fund them for their first year with the agreement that the NHS will continue to fund them. We have placed 83 Sapphire Nurses since the scheme began in 1995.
We have 80 branches around the UK where people with epilepsy and their families can meet for support, to share ideas, raise awareness and organise fundraising activities.
Our fully trained volunteers give one to one support to people with epilepsy as well as giving presentations to schools and companies.
For further information, contact:
Epilepsy Action
New Anstey House
Gate Way Drive
Yeadon
LEEDS
LS19 7XY
Telephone: (+44) (0)113 210 8800
Epilepsy Helpline: 0808 800 5050 (UK), international +44 113 210 8850
Fax: (+44) (0)113 391 0300
Email: [email protected]
Website: www.epilepsy.org.uk
The Neurofibromatosis Association (NfA) is the only UK charity dedicated to the provision of support for those affected by either neurofibromatosis type 1 (Nf1) or neurofibromatosis type 2 (Nf2), their families and the professionals concerned with their care. Although they share some similar characteristics the conditions are, in fact, two separate genetic disorders and there is still, understandably, some confusion over both their similarities and their differences.
Neurofibromatosis type 1 was first described by von Recklinghausen in 1882 and was originally named after him. It affects 1 in every 2,500 people worldwide and some 24,000 in this country alone. Complications include learning difficulties, behavioural problems, large benign skin tumours, and internal spine and brain tumours; there is also an increased risk of epilepsy. While only recognised as a condition about 120 years ago, a 2,000 year old Greek statue shows the visible ‘lumps and bumps’ that are so characteristic. It is almost certain that Victor Hugo’s Quasimodo, the Hunchback of Notre Dame, was affected by Nf1 and it may be that the author also had the disorder.
Neurofibromatosis type 2 is seldom diagnosed until loss of hearing has occurred and, by that time, those affected are in their late teens or early twenties. First described in 1822 (Wishart), while an affected person may have some visible neurofibromas on their skin, most of the benign tumours form in the brain or on the spinal cord; the main diagnostic feature are bi-lateral vestibular Schwannomas (tumours on the nerve of balance) which, as they grow, affect a person’s hearing. There is, as yet, no effective drug treatment for either condition and, in most instances, the only relief from symptoms is surgery.
The Neurofibromatosis Association was formed in 1982 to provide help, support and advice not only for those affected but also their families and the professionals involved in their care.
For further information, contact:
The Neurofibromatosis Association
Quayside House
38 High Street
KINGSTON UPON THAMES
KT1 1HL
Telephone: (+44) (0)20 8439 1234
Fax: (+44) (0)20 8439 1200
Minicom: (+44) (0)20 8481 0492
Email: [email protected]
Website: www.nfauk.org
