Living Arrows #24

Sometimes I take hundreds of photos of the boys and other times I barely take any. I decided that this year would be one where I try to capture a consistent about and document them more. It made sense then that I join in with Donna's linky, Living Arrows.

"Living Arrows is about celebrating childhood. The project originally took it’s name from a poem by Kahlil Gibran, “You are the bows from which your children as living arrows are sent forth”

#WorldFSHDDay - A Reflection

 

As many of you would know Tuesday was World FSHD Day.

It was the first year that I have been involved and helping to promote and raise awareness. I hadn't realised that there had been a day dedicated to it the previous year but I was pleased when Hannah pointed me in the direction of it!

As someone who is living day to day with FSHD I have tried to use this platform to help raise awareness of how it affects me as a person and as a dad. It is a condition that hits 1 in 8,000 people worldwide and doesn't discriminate by age, race or gender although most males will have a diagnosis in their 20s and females in their 30s.

I decided that I would write a post to help promote the day and within that capture all of the posts where I have written in detail about the different ways that it affects me. For me, this was the clearest and easiest way to raise awareness, use the social media platform that comes along with this blog and to have a base point for people who haven't come across it before and wanted to read the different aspects.

World FSHD Day 2017

 

​I decided a couple of years ago that I should talk about my Muscular Dystrophy on the blog. It was something that I had briefly mentioned in my posts in passing but not in detail until people began to express an interest in it after meeting me at a blogging event, and seeing for themselves how it affects me.

Since then it has become a topic that I continue to talk about on here and I am always really proud of that.

Although many people may have heard of Muscular Dystrophy not many have heard of the particular strand that I had. FSHD gets its name because of the type of progressive loss of all skeletal muscle, where weakness is usually noticeable across facial (facio), back (scapula), and upper arm (humeral) muscles.

Throughout the last couple of years I have tried to show my readership the highs and lows of living with it and bring a wider awareness of this horrible disease.