The Huntington’s Disease Association (HDA) is the only organisation providing a dedicated service of advice, guidance and support for people in England and Wales who are devastated by Huntington’s disease.
We run a regional Specialist HD Advisory service to support those directly affected by the disease, and their families and carers, delivered by our HD experts and tailored to the individual needs of the families we work with.
Supporting individuals and families is our core focus. Our 23 Specialist HD Advisers are currently working with a total of 13,639 people affected by HD across England and Wales. Many of these are HD patients, but they also help those at risk, and their families and carers, who shoulder the heavy burden of caring for their loved ones.
Although there is currently no cure for HD, the specialist expertise we provide empowers patients and families to manage the condition, and helps to reduce the extreme fear and isolation they often feel.
What we do
Our Specialist HD Advisers are a vital lifeline helping HD sufferers to navigate the complex care, health and emotional needs of the condition. Our advisers provide practical information, give advice and emotional support to families, identify local services, coordinate the organisation of care packages and answer crisis calls.
The Impact of our work
When Louise, from London, first got in touch with us she was really struggling to cope; the burden of living with her husband, whose Huntington’s disease symptoms were making him aggressive, violent and uncooperative, left her feeling overwhelmed, frightened and alone.
Louise told us, “My husband is in his 40s and he and his brother have the Huntington’s gene. He is violent, in denial, falls over, refuses medication, and doesn’t eat properly… He needs carers 24/7. He hasn’t been able to work since 2006. My life has completely changed, he’s not the man I married any more. For the first few years I had no-one to share these worries with. Due to the rarity of HD, doctors and social workers didn’t know how to help me. Now the Specialist Adviser has been supporting me and training the carers, she is proving to be invaluable. She introduced me to a support group and I met others in a similar situation. For the first time, I have felt able to talk about my concerns without feeling judged. She is my saving grace”
Thanks to the support of their Specialist HD Adviser, Louise and her husband are now in a safer home environment. The carers are better equipped to deal with his aggressive outbursts and they understand how his needs will change as the disease progresses. Louise also has a new network of supportive peers who have helped to reduce the isolation she used to feel.
“I cannot think of a single occasion when I have not felt truly supported and understood and felt much better and able to cope having seen my adviser.”
Help us support the HDA
Now you’ve learnt more about how the HDA support families and sufferers of Huntington’s, you can help us support the work they do by donating to our donation page or by popping a couple of quid into our box next time you’re passing the iC1 reception. All of your help is greatly appreciated and can help us help the HDA team to fight this horrific disease. Give here.