Central core myopathy
Steve and Anola Hiles live in Hengoed in south Wales, with their son Chris. Daughter Lisa lives nearby and is Anola’s carer.
Anola was in her mid-40s when she was diagnosed with central core myopathy. She wasn’t aware she had the same condition her son, Chris, had been diagnosed with at the age of 15.
“When Chris was diagnosed, we were heartbroken. We sat in front of a panel of seven people who told us Chris had muscular dystrophy. We didn’t know what that meant, and the clinical team in front of us offered us no support. They just told us to arrange adaptations for our house,” Anola said.
They found some information on the Internet about the condition, and eventually got a referral to a genetic specialist. Six years later, Anola was diagnosed with the same condition.
“I felt guilty that I gave the condition to Chris. I immediately worried about the future, and I felt redundant. I felt that my role as a mother/carer had gone, and I felt useless, a burden,” Anola said.
She struggled to feel positive and, unlike Chris who wanted to carry on with his life without any outside help, Anola really needed support.
“Rachel [local care advisor] came into our lives at a time when we were falling apart,” Anola said.
“Rachel is fantastic. She really understands what we’re going through as a family living with a muscle-wasting condition. She puts us at ease. With that kind of support, we can do anything.”
Since the Hiles family came into contact with the charity, they have become solid supporters of the charity. Not only do they campaign as patient representatives on the Welsh Neuromuscular Network, but they also do a lot of fundraising.
“Rachel taught me – and I would say this to any adult going through a diagnosis like mine – that you have to voice your fear. Make use of the support available to you, go to the family group meetings, don’t be afraid to grieve for what you have lost or what you perceive you’ve lost. With support, you can move forward.”