#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.

That was it.

I didn't ask for money or for anyone to donate. I was really clear from the start that it wasn't my aim to do that. The concept of the Orange Smile selfie seemed clear; we should be raising awareness and I wanted to keep in line with that.

I also had a real feeling that people needed to know about it, see it in action, read and feel what it was like and actually gain some understanding of what it is.

Muscular dystrophy has many different strands that cause a varying type of weakness and yet I mostly see that Duchenne's or SMA being promoted and awareness shown. I am not writing this to say that one in worse that the other but I think that all strands need awareness within the public view.

A clear example of this can be seen within the UK group for Muscular Dystrophy who posted once on Facebook that it was #WorldFSHDDay and 3 times on Twitter amongst other MD related news. (The latter in fact only appeared after it was publicly pointed out and questioned)

This just made me see how much was and still is needed to be done for people to see and understand what FSH truly is. So, at the moment, although money would be appreciated I think awareness is the main goal. 

The goal therefore was to make people see and notice what a cruel, slow and rubbish disease it truly is!

So what do I think now the day has been and gone?

I think and hope that the aim for awareness has worked and from what I have seen from a personal level as well as one witnessing it from groups like FSH Society and social media tags that people were standing up and paying attention.

My Personal Journey

It started off brilliantly and over the 2 days of promotion my initial post was read by 2,537 people worldwide and many of my posts linked in there were viewed really well too.

It also really touched me that Hannah had written her own post to show me and the campaign support. Something that I know she felt passionately about as my partner but I still loved that she did it anyway.

Then throughout the day tags and orange smile selfies were flooding in and 22 of you lovely lot took part!

I also took to Facebook and Twitter to promote and I think here is where I started to see a change and people sharing both love and support.

I started off by sharing the selfies of both the boys and myself and like my blog post some people interacted and I appreciate that. However, the real turning point came when I shared the boys photo and said about them potentially losing their smiles. It is the truth and a potential risk for both of them. I didn't do it as a shock factor but I think many parents who saw it realised what a risk it could be for them.

Then it came to me sharing a video.

I wanted to show people the truth behind my life. Something that I don't really talk about or show people and definitely something that would make people see and pay attention.

I decided that the only thing that would do that is to show the fact that I fall over, how I fall and then how I get up again. It is a sad truth and something that happens a couple of times a week. Yet, I don't talk about it or share it but instead pick myself up and carry on being dad, teacher and blogger.

For anyone who missed it then you can watch it below.

Now, firstly, let me just say that somehow, in so weird moment, I ended up deleting it and subsequently have had to upload it again! No idea how I did that but I did. But, before I did I managed to get a screenshot of the views:

This was the first video I have publicly shared on Youtube and was also something that really highlighted my vulnerability and yet was retweeted, shared, commented on and watched by over 200 people and I am really thankful for that.

On my Facebook the response, as you can see, was amazing too. I was worried about sharing it but I am so pleased that I did.

Then via the blog accounts on Facebook and Twitter.

In both cases the shares and the reactions were amazing! I didn't think this many people would support me and the campaign to that extent!

The day for me was, in truth, really overwhelming. I didn't expect the above response and definitely didn't consider more than a handful of people joining in and I can't really put into words what it all has meant to me. Thank you!

I am also aware that so far I have chatted all about me and I want to take a minute and talk about everything else that was going on for the day.

Over on Instagram the tag had 185 posts and shares and everyone all found a way to post their selfie.



On Twitter and Facebook the tag was really prevalent throughout the day but one group that I want to take time to mention is the FSH Society. They spent the day retweeting and liking all the posts on Twitter and at the same time sharing all of the highs and lows.

They were the ones pushing the day and for me really showed what a community united can do for a cause. The poster right at the top says "Unite for a cure" and I can say that I felt united with them as much as I did with everyone who joined in, including the people I didn't know.

In the grand scheme of things I know that we probably have only made a small dent across the world in raising awareness and yet I feel like we conquered a massive amount.

I was chatting to some blogging friends about the Twitter activity mark where it shows you the impression of a tweet. I know that it is very loose and no one really knows if it is accurate of not but, on the pinned blog post (shown above) it shows that over 12,000 people have seen that tweet of the post. I would never think that my post alone would spread that far but it did make me think a lot about the campaign.

Throughout the whole day people were liking, sharing and interacting with blog posts, peoples photos, stories and videos and just talking about what FSHD actually is. In my mind the number of people that saw this would have been massively higher than 12,000 even if they didn't interact. That alone shows the success of the raising awareness because whether they joined in or not people saw.

For me the love and support of a community has been beautiful and I am really thankful to you all. I have also made some new friends and followers because of the campaign and my very limited community of fellow FSHers has grown from 3 to 30 and that is amazing too.

Once again thank you for everyone who has taken the time out of the day to make a difference and talk. United we will find a cure.