• Tea and cake • Friendly chat with like-minded people •
WHAT IS HUNTINGTON’S DISEASE?
Huntington’s disease, which is often called HD, is an hereditary disorder of the central nervous system.
It used to be known as Huntington’s Chorea or HC.
Huntington’s disease usually develops in adulthood and can cause a very wide range of symptoms.
The disease affects both men and women.
If you’d like to know more please visit the HDA’s website for a full and detailed explanation of Huntington’s Disease.
CARERS-ONLY MEETINGS
Alison Heavey is a Specialist Huntington’s Disease Adviser (SHDA). She hosts special Carers-Only meetings which are helpful for those caring for a loved one affected by HD. Newcomers are always warmly welcomed, there is no charge and tea and coffee is provided.
They take place from 10.30am to 12.30pm at the Ekco Club, Thornford Gardens, Southend SS2 6PU on specific Tuesdays throughout the year. This year’s meetings are on:
TBA
To find out more please give Alison a call on 01255 823088 and have a chat. Sharing the concerns and difficulties with other Carers in a similar situation to yourself is a great source of comfort and, of course, brings the relief that you realise you are not alone!
Please do remember: these Tuesday meetings are for CARERS ONLY. It is the weekly Thursday meetings that are for everyone within the HD family.
ALISON HEAVEY
USEFUL LINKS
Here’s a few links that will take you to some informative and interesting websites and videos related to Huntington’s Disease.
CLICK HERE
CARING FOR GENERATIONS
CARING FOR GENERATIONS
A short but informative film about Huntington’s Disease. Some viewers may find some of the scenes in this video upsetting.
CLICK HERE
THE HDYO WEBSITE
THE HDYO WEBSITE
A fabulous website, aimed at young people and their relationship with Huntington’s Disease.
CLICK HERE
H.D. BUZZ
H.D. BUZZ
This is a website where scientists explain, in everyday language, the latest news about HD research.
CLICK HERE
CHARLES SABINE
CHARLES SABINE
The fascinating story of Charles Sabine, friend of the Group, and his campaign to bring HD out of the shadows.
CLICK HERE
SPEECH BY ED WILD
SPEECH BY ED WILD
Dr. Ed Wild speaking at the HDAI conference in Dublin, Ireland March 2017.
CLICK HERE
MEGAN AND BEN
MEGAN AND BEN
A short film by Anna Lukala about Megan and Ben, to raise awareness and explore what it’s like to live with HD.
CLICK HERE
UCLH
UCLH
A short film by Anna Lukala, to raise awareness and explore what it’s like to live with HD.
CLICK HERE
GARY
GARY
A short film by Anna Lukala about Gary, to raise awareness and explore what it’s like to live with HD.
UPCOMING EVENTS
PREPOSTEROUS STORIES NIGHT
Postponed – new date to be confirmed
WILD WOODS DAY
Postponed – new date to be confirmed
PAPERMILL LOCKE
Afternoon of June 18th, with afternoon tea
KIM’S FRIENDS FACEBOOK GROUP
This is a SECRET FACEBOOK GROUP designed to offer Peer Support for anyone who has undergone a predictive test for Huntington’s Disease and received a negative test result. The Group is named after a young woman who had a negative test result but wanted more support than was available at the time.
It allows you to communicate openly about what it was like for you having to go through predictive testing for HD. It is moderated by two Specialist HD Advisers who can answer questions and ensure the safety of its members.
If you’d like to join, email either of the Moderators:
HELEN JAMES – helenjames@hda.org.uk
DIANA KING – dianaking@hda.org.uk
Helen and Diana will ask that you provide them with just a little bit of a background to your story and journey so far. They will then forward you a link that will enable you to join the secret Facebook page.
