The NHS has just celebrated its 70th birthday this year. The NHS was set up in 1948 by Health Secretary Aneurin Bevan. The idea was to have healthcare under one umbrella organisation which would be free at the point of delivery. This means it would be paid for mainly through taxes, but when people need care, they would not have to pay.

The Ipswich Epilepsy Support Group would like to wish the NHS a happy birthday and thank them for all the work they have done and do and especially thank them for all the work they do to help people who suffer from epilepsy.

Friday 21st September 2018 sees the return of National Doodle Day, Epilepsy Action’s annual festival of fun and fundraising. As ever the biggest part of national Doodle Day will be the online auction of celebrity doodles. There are many amusing and wonderful doodles from people like the illustrators of some of your favourite books and famous faces from stage and screen.
Their Doodles will all be on sale through Ebay from 21st to 23rd Sptember. You can find your favourite Doodle at epilepsy.org.uk/doodleday and don’t forget to bid when the auction opens.

What is Dravet Syndrome ?

Dravet Syndrome is a rare and severe type of epilepsy.The Condition was first described in 1978 by Charlotte Dravet, a paediatric epilepsy specialist working in Marseille, France. It usually starts in early childhood and is sometimes called catastrophic epilepsy.It is estimated that Dravet Syndrome affects one in 40,000 people. However recent data suggests the real number is closer to one in 19,000.

Recognisable features

Seizures happen often and can be prolonged. This type of epilepsy is usually resistant to medicines, and a few epilepsy medicines are needed to help with seizures. Emergency medicine may be needed for prolonged seizures. Many people with Dravet Syndrome have sleep issues, feeding problems and the vast majority have learning disabilities at some level. Later in life people may also have mobility problems. Some have speech some have no speech one may walk the other may not. Everyone experiences Dravet Syndrome differently.

Dravet Syndrome UK supports people affected by Dravet syndrome. The charity provides night time monitors, holds a conference for families and professionals every two years, and runs an online forum for families. They also put on a family weekend at Center Parcs, run a 16 plus assistance fund and help fund research into the condition.

Contact Dravet Syndrome UK for more information at Dravet Syndrome UK Telephone 07874866937. Email info@dravet.org.uk Website dravet.org.uk for more information about this condition.
Soure Epilepsy Action

Taking a trip or a holiday can sometimes be hard if you have Epilepsy so here is the groups top fourteen tips to help have a smooth and safe holiday.

1. Make sure you have enough medication for the whole holiday. Your doctor’s surgery will give you extra medication if you ask your chemist to say that it is for a holiday. It may be worth considering splitting your medication in two so you have one lot in hand luggage and the other in your suitcase just in case one lot gets lost you will have a spare set of your medication.

2.Check what paperwork you need for your medicine. Some medicines are controlled under the Misuse of Drugs laws. You may need a letter from your doctor if you are travelling with certain medicines. You can visit epilepsy.org.uk/abroad for more information about this.

3.Think how to store your medication airlines like to see the medication in a clear box and make sure if needed your medication is kept in a cool dry place. Your pharmacist can advise you how to store medication. Go to the airports web site to see the latest ways to present your medication.

4.Remember the time difference for certain countries so change alarms alerts to compensate for this.

5.Check with your surgery or chemist if you need vaccinations for the country you are traveling to and ask if this will effect your epilepsy medication. While your at the chemist ask for a spare prescription list for you to take with you when your on your holiday.

6.The group would always advice you to take out medical insurance as becoming ill while abroad could easily become a costly experience.

7.If travelling in Europe apply for a EHIC European Health Insurance Card which will allow you to access state provided health care in some European countries.The card is free and you can apply for one at ehic.org.uk

8.Check if you need medical clearance for any flights. Most airlines follow the International Air Travel Association IATA medical guidelines. These say that if you had a tonic clonic seizure less than 24 hours before your flight you will need medical clearance to be allowed to fly. Some airlines may differ so check the policy before you fly.

9.Consider identity jewellery or an Epilepsy ID card stating you have Epilepsy and who to call in an emergency if a seizure occurs.

10.Consider telling airline staff that you have epilepsy so if you do have some form of seizure what ever type it is staff will be able to help you if the need arises.

11.If you have a VNS device it is advisable you have a medical letter stating this as the VNS could set off the metal detector device. Show security staff your letter so you can be frisked instead of having to go through the metal detector device. Security staff would rather frisk you than have your device set off the metal detector device.

12.know your limatations when doing certain sports as some activities and Epilepsy do not mix. Consider telling staff who help with sports and tour guides that you have Epilepsy so they can watch out for you if a seizure does occur. Hotel staff may be able to bring food to your room if you have had a seizure and are unable to go down to eat a meal.

13.Remember that the sun can effect some people’s seizures so make sure you are able to cool down with a quick dip or a cool drink and don’t stay in the sun all the time find some shade so you do not get to hot.

14.Remember depending on what you are doing and what country you are going to disabled concessions may be available as you have Epilepsy.Its always worth asking as the saying goes if you don’t ask you don’t get.

Be safe but importantly make sure you have a really enjoyable holiday and remember it for the happy memories. Everyone’s seizures are different and you should be the best judge of any restrictions or triggers caused by your epilepsy and how they affect you on a day to day basis.

Source of information Ipswich Epilepsy Support Group and Epilepsy Action advice correct as of July 2018. Rules, policys may change so please keep up to date by contacting the realavant bodies.

Epilepsy Action is doing having a Tea Break on Friday the 19th of October 2018.

Sign up now to receive a fundraising pack at epilepsy.org.uk/teabreak

The Ipswich Epilepsy support Group would like to wish Marianne Peachey a very happy retirement and thank her for all the support help and guidance she has given the group over the years.

The Ipswich Epilepsy Support Group can partly or completely fund aids and adaptations for people with Epilepsy in the Suffolk area subject to available funds and committee approval. This includes white goods, costs for respite or holidays or medical equipment For more information about the type of equipment we are able to help fund please phone our help line on 01473 461407 and go to our aides and adaptions page.Terms and conditions apply.