What is HD?

Huntington’s Disease is a neurological disorder caused by a faulty gene in one of the chromosomes. The gene damages nerve cells in the brain, which leads to gradual physical, mental and emotional changes.

Each person whose parent has HD is born with a 50:50 chance of inheriting the faulty gene. Anyone who inherits the gene will at some stage develop the disease.

A genetics test is available for IOM residents at the Liverpool Women’s Hospital in the United Kingdom. This will identify whether someone has inherited the faulty gene, but will not show the age at which they will develop the disease.

Early symptoms of HD

Symptoms usually start between the ages of 30-50, but can start at any stage in life.

Early symptoms include:

  • Slight uncontrollable muscular movements, stumbling and clumsiness
  • Lack of concentration and short term memory lapses
  • Depression and mood changes, which may include aggressive or anti-social behaviour
  • Difficulty thinking through problems and adapting to changes

How HD progresses

Later on in the illness, sufferers experience a number of different symptoms:

  • Involuntary movements
  • Difficulty with speech and swallowing
  • Weight loss
  • Emotional changes resulting in stubbornness, frustration, mood swings and depression
  • Cognitive changes result in a loss of drive, initiative and organisational skills
  • Difficulty concentrating on more than one thing at a time

In the later stages of the disease, more care and support will be needed.

What treatment is available?

Currently there is no cure for HD, but there are many ways to manage the symptoms effectively:

  • Medication can be used to treat symptoms such as involuntary movements, depression and mood swings
  • Speech therapy can significantly improve speech and swallowing problems
  • A high calorie diet can prevent weight loss

Who can provide help and advice?

General Practitioner – if you have a history of HD in your family or are showing any of the symptoms above, your first point of contact should be with your GP. Any healthcare professionals involved in the diagnosis and treatment will remain in contact with your GP. They have the knowledge and understanding to provide you with advice and support.

We are committed to the following:

  • Increasing awareness of Huntington’s Disease on the Isle of Man;
  • Providing a support group for patients, carers and professionals resident in the Isle of Man to come together and share information to help each other;
  • Providing financial assistance to patients and carers to enable them to attend seminars and other educational events organised by the HDA and relevant organisations on the island and elsewhere, providing financial assistance to enable such events to be held on Island;
  • Providing financial assistance to enable the purchase of equipment which will improve the quality of life of patients;
  • Promoting research into Huntington’s Disease by making grants to relevant research organisations.

For more information, please visit the UK HDA Website