Luke Grindlay, 23, was diagnosed with HSD in primary school when teachers noticed he struggled to use pens and cutlery.
He hasn’t sought treatment, which he says is probably down to “imposter syndrome”, fuelled by a lack of information on HSD.
“If you go online to research this, there’s nothing there… I’m going through a lot of pain, but because I can’t find anything about it, it’s almost like I’m making too much of it.”
The unpredictable nature of how HSD can impact me means I relate to this idea of imposter syndrome. Sometimes I can run long distances without too much pain, while other times a shopping trip can tire me out.
Luke works in golf and his role can require a lot of waiting around on courses, which can be painful. However, he says: “It’s hard for me to tell people, because not many people know about the condition.”
Luke finds the impacts hitting “harder” as he gets older.
Vivienne says her social life and work has been impacted. “I used to work as a massage therapist in work places, but I couldn’t stand for long and I would get really tired.”
She changed job, and now works as a massage therapist for people living with dementia, which is less physically demanding.