Resources
The aim of this book is to familiarise carers with Huntington’s disease, so that they can recognise its symptoms and know what to expect as it progresses.
It also includes general principles of care and tips that other carers have found useful.
WORDS AMY HALE
As everything changes around us day by day, in ways most of us have never experienced before, we are feeling a lot of uncertainty – in our own lives, for our families, friends and for the world in general. In a situation like this, both the known and the unknown can cause increased levels of worry and stress, especially for those in families affected by Huntington’s disease who are already coping with a lot.
Access our Youth Connection counselling services.
WORDS LEWIS KAPLAN
I had the privilege of attending the EHA conference in Bucharest, Romania in October 2019.
Here’s a few stand-out presentations and posters and Q&A with John Eden, CEO of the Scottish Huntington’s Association.
Huntington’s disease can be challenging on a good day, therefore preparing for self-isolation and being informed on the best ways to cope during this difficult and confusing time is very important. Below, are some tips on coping with COVID-19 isolation for people with Huntington’s disease.
WORDS AMY HALE
Dealing with life’s challenges as a young person can be difficult. School, work, relationships, friendships and family usually provide more than enough to cope with, put the extra challenges HD brings on top of all of this and it’s no wonder kids and young people affected by HD have a much harder path to navigate.
Isolated Patients Travel and Accommodation Assistance Scheme (IPTAAS) is a NSW Government scheme that provides financial assistance towards travel and accommodation costs if a patient needs to travel long distances for health or medical treatment that is not available locally.
What does this mean and what should I expect?
WORDS LEWIS KAPLAN
Moratorium on Genetic Tests in Life Insurance came into effect in Australia from 1 July 2019 and will end on 30 June 2024.
WORDS AMY HALE
As the youth social worker, one topic I encounter all the time is genetic testing and the decision a lot of young people face –should I test or not?
WORDS GISELLE BEAUMONT
Carer respite is not covered in the NDIS. What words do I need to use when talking to the NDIS planner so that I can get some respite to help me to continue my caring role.
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