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What it's like to live with Huntington's disease - a perspective from SACARE clients

The month of May has been Huntington’s Disease Awareness month, and it is a cause that is so important to us at SACARE. Huntington’s is an inherited digressive neurological disease that affects the individual’s ability to control movement, coordination, cognition, personality, and emotions. Huntington’s affects more than 1800 individuals in Australia, and there is currently no cure.

At SACARE we want to help spread awareness on Huntington’s disease, as further education in the community will make such a significant impact. Huntington’s disease is not a commonly known disease, despite so many people affected around the world. SACARE has several clients with Huntington’s so we wanted to remind people that there is an incredible person outside of the disease.

Bronnie, a resident at Magill supported accommodation shared her exciting life before being diagnosed with Huntington’s disease. She was a head chef and worked in popular restaurants in locations like McLaren Vale, and events such as the Grand Prix. Bronnie has three children and two beautiful grandchildren and she shared how important her family is to her. Every week she attends the Huntington’s SA morning tea (currently held on Zoom) and she spoke of how much she loves going out and socialising and having a community that understands and accepts her. She wishes that the public could know more about Huntington’s, her condition , and knew how she felt. What's most important to her is when people listen and communicate with her.

Darren, another resident at Magill supported accommodation explained how the staff have now become his family, and how privileged he feels to be living there. Darren has also had an extraordinary life, working as a “carny” and has traveled all over Australia. He shared how important it is to make the most of your life, and if he could go back to work, he would in a heartbeat. Darren also expressed that he wished people had more knowledge about Huntington’s disease, so communication would be easier. Darren regularly attends Huntington’s SA morning teas as well. He explained how much he loves and misses the events, as having a community that is inclusive, patient and understanding is so important.

Mikkel, a resident at Briarhlom supported accommodation shared some of his favourite memories with us. When Mikkel was in his twenties he borrowed a van and traveled around Australia. Every day he went fishing, and every night he camped on a different beach and explored the coast of Australia. Mikkel explained that the hardest part of having Huntington’s disease is coping with the inability to do things for himself. He wished more people understood his conditions and were more empathetic. Mikkel explained how not many people know what Huntington’s disease, and that’s why it’s so important to acknowledge it and recognise the people who struggle with the disease every day.

We are so lucky at SACARE to have so many remarkable clients. Their stories are so inspiring, and we love learning more about them and their lives. To read more about Mikkel’s story, click here. For more information about our supported accommodation, click here.


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