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    Call for support for Huntington’s Disease

    Written by on December 17, 2021

    More needs to be done to support families and those suffering with Huntington’s Disease.

    That’s the message from Forth Valley resident Dr Marie Short.

    She suffers from the hereditary disease and has been campaigning for 18 years for specialist support to be implemented & improved across Scotland.

    A recent motion put forward to Scottish MSPs with the backing of Scottish Huntington’s Association became the most supported call to action in Scottish Parliament history.

    Marie said:
    “My family members in Fife have a dedicated, community-based HD Specialist who knows them all very well and understands what is needed and when. She is proactive, providing the early interventions required to prevent crisis situations from materialising.

    “I can’t understand why there has been so little progress in Forth Valley over the past 18 years compared with other parts of Scotland, especially when it makes sense to help people to live at home for as long as possible and reduce the risk of crisis situations and acute hospital admissions.

    Failing to provide an HD Specialist Service is a classic example of a false economy.

    “I know my mental and physical health will deteriorate and my family will need support, and I know there are other families in Forth Valley right now who have struggled for years without specialist services. For as long as I’m able, I’ll continue to demand a better standard of care for every HD family.”