Fife families open shop to raise awareness about Huntington’s Disease

Families, pictured when the pop up shop last opened in 2019, are glad to be back for the first time since the pandemic began.

Families in Fife are joining forces to mark Huntington’s Disease Awareness Month, increase understanding and raise vital funds for the local Family Branch of Scottish Huntington’s Association.

They are holding a ‘pop-up shop’, staffed by volunteers from local families affected by Huntington’s disease. It will open on Saturday, 22 May until Thursday, 27 May in Wesley Street, Methil.

Jillian Foster, Senior HD Specialist who supports families in Fife, said:

“The shop is a great way to bring us all together, raise awareness and reach people who might otherwise never know there are families with Huntington’s disease in their community,” said Jillian.

“As restrictions lift, we’re looking forward to meeting customers, many of whom come in looking for a bargain and leave knowing more than they did about Huntington’s disease, how it impacts families, and what we can do to support them.

Huntington’s disease is an incurable neurological condition with symptoms that typically begin to develop between the ages of 30 and 50. 

The hereditary nature of the disease means it impacts upon entire families over generations rather than on individuals alone. This dreadful toll is compounded further by the reality that each child of a person who has Huntington’s is at 50% risk of inheriting the disease.

The symptoms are complex and severe, affecting people physically and psychologically. They include a decline in:

• Control over movement. People with Huntington’s disease can develop repetitive involuntary movements, causing balance and coordination problems which may lead to the loss of ability to walk, talk, eat and swallow.
• Thinking processes (or cognition). An early onset dementia affects ability to process information, make decisions, solve problems, plan and organise. 
• Mental health. Depression, anxiety, irritability, obsessive pre-occupations and apathy are among those associated with the disease. Psychosis can also occur.

A lack of public awareness about Huntington’s adds to the serious health and social challenges faced by families, many of whom are left feeling isolated in their own communities.

“The money raised will go to the Scottish Huntington’s Association Fife Family Branch, which provides local families with vital opportunities to connect and support one another,” said Jillian.

The volunteers are appealing for donations of second-hand items to sell in the shop.

“We take everything and anything that fits into a car,” added Jillian. “Items can be dropped off at the shop on Friday, 21 May after 1pm, the day before we open. Or you can give us a call on 01592 647993 to arrange for goods to be picked up.”