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Hope Dignity Awareness
Huntington’s Victoria is the leading specialist service that supports individuals impacted by Huntington’s disease.

Client Profile - Linda

My name is Linda. My husband and his twin brother had HD. My 34 years old daughter also has the disease and unfortunately has to move into care this year as she now requires 'around the clock' care.HD rips and tears families apart in all its aspects. It affects the family in different ways. HD never leaves you. One story ends and another starts.

My worst experience has been to watch my daughter Emma, deteriorate with HD. It is heartbreaking to see her suffer and think that she is not going to be around. Family and friends have stopped visiting her because they do not know how to deal with her. She is no longer able to make her own decisions, and so I have to make them for her. Sometimes I have to be cruel to be kind. I miss my daughter a lot. I miss doing things with her and having a conversation with her. Just one little smile in her face means more than anything to me.

It is a lonely life with HD, but I know that I am not the only one in this position. It would have been horrible without HV. The team has been great and has always been there to support me and my family.


Accredited by the Australian Council on Healthcare Standards until 15/07/2020