Wednesday, 20 June 2018

#WorldFSHDDay 2018

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.

For me, at the time, it was a big step to finally open up but I am so pleased that I did; I felt it showed the side of me that not many people would really realise is going on.
From there I even showed you guys the new adaptions that my specialists arranged for me to improve my walking; despite them being painful to use and then discussed why I stopped wearing them.
There have also been the harder posts when I shared how scared I am with the noticed decline in my walking and if it was time to use a wheelchair, what happens when I fall and more recently the fact that I felt I pushed myself too much making both myself and the boys vulnerable and then having William calling 999. There have also been the posts that I have shared where I have struggled mentally and physically with daily pain and opened up to how I feel trapped in this broken body.
Finally, I have spoken about how it affected me as a parent.  How there were and still are things that I wish I could do with the boys, how I am proud to be disabled because of how the boys react with me being in publicand my heartache as William showing signs of having it.
Each post showed a little more; it equally exposed my vulnerability and highlighted the different areas of the disease.
There is still little known about it, so here is what we do know:
FSHD is estimated to affect about 870,000 individuals worldwide, the actual number of individuals with FSHD could be significantly higher due to undiagnosed cases.
FSHD is worldwide in distribution, affects both sexes equally, and has no particular racial, geographic, or ethnic distribution.
The age of onset can range from infancy to adulthood. The eventual extent and degree of muscle loss is also highly variable. The prognosis for FSHD includes a loss of muscular strength that limits both personal and occupational activities, and approximately one-quarter of patients over 50 years of age require the use of a wheelchair.
Although the progression of FSHD is quite variable, it is usually relatively slow, with most patients developing noticeable muscle weakness by the age of 20 in males, and by the age of 30 in females.
Thirty percent of new FSHD patients have no prior family history of the disease and are a result of congenital spontaneous genetic mutation. Once present, however, FSHD is genetically transmissible in an autosomal dominant fashion. This means that an affected parent has a 50 percent chance of passing the genetic defect on to each child.
As you can see there is very little known and what is understood is so varied. Sadly, along with this there is even more limited understanding related to finding a cure or treatment. 

Yet, there are still too few people talking about it; even MDUK shy aware from recognising It!

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 2 times on Twitter amongst other MD related news last year! (The latter in fact only appeared after it was publicly pointed out and questioned)

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.

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. 
However, this year, as well as 2 previous years, the FSH Society will be embarking on a social media campaign, the Orange Slice Selfies campaign. Supporters are encouraged to share selfies using orange slices in place of their smiles, using#WorldFSHDDay.
Every June 20th, people gather to celebrate World FSHD Day to raise awareness. Participants from across the globe, advocacy organizations, including individuals with FSHD, as well as their families and supporters, come together in various ways to raise awareness for, one of the most prevalent forms of muscular dystrophy, FSHD.

Like last year, I knew that I had to join in. This is only the third year that there’s been a #WorldFSHDDay
The response last year from our action was amazing. People sharing my posts, videos or posing with orange selfies were totally overwhelming. Yet,when it came to me sharing a video the realisation that my voice needs to be heard more became clear.

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.

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

The video has, to date, 28, 

The day for me was, in truth, really overwhelming. I didn't expect the response and definitely didn't consider more than a handful of people joining in!

I will be sharing some bits across social media for the day as well as supporting all the orange slice selfies so keep a look out.
I am not asking for money or even for anyone to donate.
However, what I would love though and ask is if everyone would do what the campaign is asking for and unite to find a cure and share an orange selfie for awareness and just use the tag #WorldFSHDay and/or tag @FSHSociety
If we are the only ones in the UK discussing it then it needs as much help as it can get!
Let’s unite for a cure.

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