Huntington's Disease (HD) is a complex neurological condition with symptoms that typically begin to develop between the ages of 30 and 50. (In around 5-10% of cases HD symptoms develop before the age of 20 - this is known as Juvenile Huntington's disease).
As HD progresses it can affect a person's movement (or motor skills), thinking processes (or cognition) and mental health. Symptoms generally progress slowly over a long period time. Those impacted may experience gradual loss of independence and require increasing care and support. Most people with the condition will eventually require 24-hour care.
HD is hereditary, meaning it impacts upon entire families over generations rather than on individuals alone. Each child of a person with HD has a 50% chance of inheriting the condition.
The north of Scotland has specialist HD services, with contact details as below:
North of Scotland contacts (Grampian, Highland, Western Isles, Orkney & Shetland)
Professor Zosia Miedzybrodzka
HD Lead Clinician
Aberdeen Royal Infirmary
Ground Floor
Clinical Genetics Centre
Ashgrove House
Foresterhill
Aberdeen
AB25 2ZA
01224 552120
HD Lead Clinician
Aberdeen Royal Infirmary
Ground Floor
Clinical Genetics Centre
Ashgrove House
Foresterhill
Aberdeen
AB25 2ZA
01224 552120
Stella Sihlabela
HD Specialist Research Nurse
01224 552120
HD Specialist Research Nurse
01224 552120
Grampian only contacts
Sam Buckley
Senior HD Specialist
01224 550062
01224 550062
Alison Hamilton
Head of Speech & Language Therapy
01224 552216
Head of Speech & Language Therapy
01224 552216
Highland only contacts
Gordon Bogan
Senior HD Specialist
Recreation Hall Building
Raigmore Hospital
Inverness
IV2 3UJ
01463 729958
Senior HD Specialist
Recreation Hall Building
Raigmore Hospital
Inverness
IV2 3UJ
01463 729958
North of Scotland Specialist Youth Advisor and Financial Wellbeing Services
The North of Scotland service also has a Specialist Youth Advisor who works with people between the ages of 8 and 25 who live in families affected by HD:
David Drain
Specialist Youth Advisor
01224 550063/ 07854 769571
david.drain@hdscotland.org
A specialist Financial Wellbeing Service is also available to HD families throughout the north of Scotland. The service provides information, confidential advice, guidance and support to people living with Huntington's disease on a range of money issues:
Specialist Youth Advisor
01224 550063/ 07854 769571
david.drain@hdscotland.org
A specialist Financial Wellbeing Service is also available to HD families throughout the north of Scotland. The service provides information, confidential advice, guidance and support to people living with Huntington's disease on a range of money issues:
The National Care Framework for Huntington's Disease
The Scottish Huntington's Association has published a National Care Framework which outlines the care and support HD families should be entitled to receive throughout the country. It can be viewed at care.hdscotland.org.
The National Care Framework is funded and supported by the Scottish Government and backed by all parties in the Scottish Parliament. It was developed by a multi-disciplinary expert group and has been supported and endorsed by the National Advisory Committee for Neurological Conditions, NHS Boards, Health and Social Care Partnerships, professional bodies, HD family members, academics and national and international third sector partners.
The Framework seeks to ensure that the care and support provided to individuals and their families living with Huntington's disease takes account of their specific health & social care needs throughout their experience.
Please refer to the "Regional Frameworks" section of the site for your local Framework.
01224 552120
Location
Aberdeen Royal Infirmary, Foresterhill
Aberdeen
AB252ZA
Aberdeen
AB252ZA