Today is FSHD Awareness Day – find out more about the day and the condition here.
Ann Blake, a former nurse with FSHD, recently won the opportunity to fly to Las Vegas for a research conference into the condition – and has praised the US for being “incredibly accessible”.
Ann Blake, 56, from Hampshire, was thrilled to discover that she had won a place at the FSH Society 2018 conference after entering a competition draw online, and flew out earlier this month.
Ann said the conference allowed her and other attendees to ask world-class researchers questions about her conditions.
She said: “I only found out about it by accident, really. I was suffering from insomnia, and one night when I couldn’t sleep I found the FSH Society page and decided to apply for the scholarship. I got an email two months later saying they were giving it to me. I thought that because I’m from the UK I might not be eligible, but they gave me $400 towards the flight.
“There were two days of very scientific research presentations, and then some lectures in simpler language to help us understand it all. There were demonstrations of new ‘outer skeletons’ that can help people walk, and then a dinner on Saturday night where all the clinicians and scientists sat on different tables and rotated throughout the night so that we all had a chance to ask them questions.
“It was great to see so many other people with FSHD there. I was noticing the way other people were holding their cups and cutlery, and realising that it was the same way I do. There were lots of neurologists there who had FSHD or had family with FSHD, and it really made a huge difference to me to be around people with the same condition and share our experiences.
Listening to the clinicians and scientists, I realised how hard they are working on trying to beat this condition.”
Ann also praised the venue and destination as easy to visit as someone living with the condition.
She said: “Getting into the US in a wheelchair is easier than getting in on foot. The immigration officers were really friendly. They actually look you in the eye, compared to a lot of other places where they just ignore you. They spoke to me and asked me where I was from and where I was going.
“They met us off the plane and took us straight to the taxi. They took us through a back route after customs so we got from the airport to the pavement in about ten minutes, whereas normally it takes about an hour and a half.
I’d say to anyone in a wheelchair going to the US that it’s very accessible. A lot of people over there are a bit larger and it’s more common to see people in mobility scooters, which means they are really easy to hire. They are really aware of accessibility so there are ramps everywhere as well.”