Human stories at the core of health conference

Real life experiences of what it’s like living with the degenerative brain condition Huntington’s disease (HD) was at the heart of a conference held recently at the Bay Hotel, Kinghorn.

The annual meeting of the Scottish Huntington’s Association, the only charity in the country supporting families living with the condition, attracted 150 people to the Fife venue to hear the latest on research and care standard improvement as well as getting a chance to share experiences.

Fife SHA specialist nurses Jillian Foster (right) and Nicola Johns with conference speaker Joyce Kinnear (centre).

Fife SHA specialist nurses Jillian Foster (right) and Nicola Johns with conference speaker Joyce Kinnear (centre).

SHA chief executive John Eden said:

“The stigma around HD meant that in the past people were reluctant to talk about the disease. Hearing about people’s own HD journey here shows how far we have come in being able to talk about the disease and the impact on people’s lives, which can only be good in increasing general understanding of the condition.”

HD is a hereditary progressive condition that causes changes to muscle control, thinking processes and can cause long-term mental health issues. The average age of onset is between 33 and 45 and those living with the condition will require 24 hour care as it progresses into its later stages. Each child of someone diagnosed with HD is at 50% risk of developing the condition themselves.  There is no cure.

It is estimated that there are around 1100 people living with the condition in the country with another 5000 potentially at risk.

One of those sharing their story was Joyce Kinnear from Rosyth who had a number of issues dealing with her diagnosis before getting in touch with the SHA fife team.

“They have done more for me than anyone else. I was really struggling before, now I have a future to look forward to,” she said.

The SHA team provide a range of support to people living with HD including specialist nurses, a youth support team, a financial wellbeing service all backed by dedicated volunteers.