Our Mission: To sustain a high quality of life for existing sufferers and their families and to work with others to find a cure for Huntington’s Disease.
HD Community
Please let us know about the issues that affect your lives as sufferers and carers. The better informed we are about problems that affect you (and all of us) the quicker we can rally our resources to help solve them..
Huntington's History
Huntingtons Disease was named after an American doctor called George Huntington (1850-1916)....READ MORE.
Huntington's Research
The most up-to-date and comprehensive source of research information on the web for you to learn more....
Welcome
We hope that this website will prove to be a valuable resource for families in N. Ireland who live with Huntington's disease. It should be a valuable signpost to information and resources that you may need as well as being a point of contact for anyone who needs general advice and support.
You will find lots of information about Huntington's disease including downloadable resources in the form of publications and fact sheets as well as links to many other online resources.
If you would like to fund raise or donate, you can do so at the HDANI Virgin Money Giving website.
If you would like to learn more about how you can help us, visit our Donations page for more information.
There is a striking lack of awareness of Huntington's disease in the public domain and also in the realm of science and the world of the health professionals upon whom we all depend for research, medical advice and treatment. One of the biggest problems facing those who live with Huntington's disease in their family is that this lack of awareness represents an enormous barrier to accessing the support necessary to help families cope with the complexities of the disease.
Historically, since a time when it was known as St. Vitus' Dance, Huntington's disease has been associated with stigma and social exclusion, shame and secrecy and even persecution. The transition from this regrettable, almost medieval, perception to a modern and more empathic understanding of disease is still hindered by the persistence of this stigma.
The Huntington's Disease Association Northern Ireland (HDANI) was originally set up in 1976 by a group of family members who, in the absence of other accessible resources, desperately needed to provide some peer advice and mutual support for other families in N. Ireland living with HD.
The association became a registered charity in 1989 and is now a company limited by guarantee withover 100 members from all over N. Ireland.
It's governing body is made up of individuals whose families are affected by Huntington's disease (HD) and highly committed professionals.
The 'Amaryllis', the international symbol of Huntington's disease in the right hand info panel, represents a double image of a head and shoulders as the flower of a growing and vibrant plant.
The reduced size of the inner head and shoulders image symbolises the diminution in a person caused by Huntington's disease. The leaves represent the protection, purpose, growth and development of the Huntington's community worldwide in its search for a cure and treatment.
Temporary Telephone Helpline Monday to Friday 9am to 5 pm
028 902863982
Please feel free to contact the association via our development officer Errol Walsh (Tel: 028 2177 1812) and rest assured that your confidentiality will be respected.
If there is no-one to take your call please leave your name and number and we'll get back to you as soon a possible.
Monday, 5 March 2012
About Us
Huntington's Disease Association Northern Ireland
Links
Huntington's Disease Association Northern Ireland
Useful links to external websites giving help, advice and inspiration for those affected by Huntington's.
Wednesday, 29 February 2012
Choosing A Care Home
Huntington's Disease Association Northern Ireland
Fact Sheet No: 9
Not all care homes are the same – spending some time considering your options will help you choose a good one.
Not all care homes are the same – spending some time considering your options will help you choose a good one.
Category: Factsheets
Seating, Equipment and Adaptations
Huntington's Disease Association Northern Ireland
Fact Sheet No: 8
Assessment of Need
Under the Chronically Sick and Disabled Persons Act 1970, local authorities have a statutory responsibility to arrange for the provision of equipment and adaptations to the home that will help people maintain their independence and continue living in their own homes. If you live in a residential home, you may also get help.
Assessment of Need
Under the Chronically Sick and Disabled Persons Act 1970, local authorities have a statutory responsibility to arrange for the provision of equipment and adaptations to the home that will help people maintain their independence and continue living in their own homes. If you live in a residential home, you may also get help.
Category: Factsheets
Huntington’s Disease and Driving
Huntington's Disease Association Northern Ireland
Fact Sheet No: 7
Our Assocation values independence highly and the ability to drive is held in high esteem; however holding a licence to drive is a privilege, not a right, and as such we have a responsibility to ourselves, and to others, to ensure that we drive safely and lawfully.
Our Assocation values independence highly and the ability to drive is held in high esteem; however holding a licence to drive is a privilege, not a right, and as such we have a responsibility to ourselves, and to others, to ensure that we drive safely and lawfully.
Category: Factsheets
Sexual Problems
Huntington's Disease Association Northern Ireland
Fact Sheet No: 6
It is by no means inevitable that Huntington’s disease sufferers and their partners will have any sexual problems at all. Many couples continue to have a mutually satisfying relationship for a long time and adapt to circumstances in a way suited to both partners.
It is by no means inevitable that Huntington’s disease sufferers and their partners will have any sexual problems at all. Many couples continue to have a mutually satisfying relationship for a long time and adapt to circumstances in a way suited to both partners.
Category: Factsheets
Eating and Swallowing Difficulties
Huntington's Disease Association Northern Ireland
Fact Sheet No: 5
Difficulties with eating and swallowing (dysphagia) and maintaining a constant body weight are among the most troublesome complications of Huntington’s disease.
Difficulties with eating and swallowing (dysphagia) and maintaining a constant body weight are among the most troublesome complications of Huntington’s disease.
Category: Factsheets
Behavioural Problems in Huntington’s Disease
Huntington's Disease Association Northern Ireland
Fact Sheet No: 4
Behavioural changes are a characteristic feature of Huntington’s disease which, although less obvious to the casual observer than the involuntary movements, represent for many families the most distressing aspect of the condition.
Behavioural changes are a characteristic feature of Huntington’s disease which, although less obvious to the casual observer than the involuntary movements, represent for many families the most distressing aspect of the condition.
Category: Factsheets
