Living with Gaucher disease presents its own challenges. Even something as simple as an X-ray poses difficulties not understood by those who know nothing about this rare disorder. Upon one visit to an ER I had chronic bone pain and required X-rays. The technician, although far from green, had no idea how much pain I was in. Being handled roughly can prove frustrating for he didn’t realise I needed help - I couldn’t get onto the bed and manoeuvre myself into position. I required assistance in moving my legs gently for hip joints are often delicate and painful. I almost need a sticker on my forehead “handle with care”.
Take a look at my article this week in The Huffington Post which is about hosting dinner parties with Parkinson's in tow!