Josh and Sharon’s story

Josh was 18 when his mum Sharon first began to notice changes in him – and their fears were realised when he was diagnosed with Juvenile onset Huntington’s disease, which develops much earlier and progresses faster.

“My speaking and my walking are becoming more affected now,” said Josh (27). “My biggest fear is that the day will come when I won’t be able to talk to my friends. Now I’m determined to do all I can to raise awareness about this disease and help other families.”

Having given up her career in the legal profession to care for Josh full time, Sharon relies on the support of Scottish Huntington’s Association to cope with the changes in Josh physically and cognitively, as well as the impact on his mental health.

“Josh and I are very close but there was a time when we just weren’t coping. His mental health was going downhill and he would phone me at work threatening to kill himself if I didn’t come back,” said Sharon.

“I was worried that either I would end up in hospital because I couldn’t cope or he would need to go into care. Our HD Specialist from Scottish Huntington’s Association was a great support to us both. He visits regularly to see how we’re doing and makes sure that we have what we need. It makes such a difference to have someone to talk to, who is on our side, and who understands what’s happening to Josh and knows what I need to be able to cope as his carer.”

“Over time Josh’s mental health has improved but the physical symptoms are progressing; I see a big change over the past few months with his walking and balance. We have a wheelchair now but Josh is trying to keep walking for as long as he can. We both know what lies ahead and are doing our best to make the most of the time we have together.”

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