Monday, 19 June 2017

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.


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 public and 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.
Yet, there are still too few people talking about it. 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.
However, this year 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 (Tomorrow), 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.


When I heard about this I knew that I had to join in. This is only the second year that there’s been a #WorldFSHDDay and obviously the first to have a clear social media message to back it.
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
Let’s unite for a cure.


13 comments:

Anonymous said...

This is a brilliant post Marty and a really really important campaign. I will need to send Mr A out to get some oranges but until then I will share the shit out of this post xx Mrs A

Lisa said...

Great post Martyn, but I wish I'd read it before I went shopping this morning because I have no bloody oranges!

Relentlessly Purple said...

Fantastic selfies! I'll definitely be helping spread the word!

Plutonium Sox said...

Brilliant post, and I'm sure you'll do a huge amount to help raise awareness, as you already do.
Nat.x

Sally Kent said...

This is a brilliant post and like the others no oranges!! We are out for the day tomorrow and if we see some oranges we will definitely join in xx

Clare aka Emmy's Mummy and said...

There will be lots of orange selfies. It's great you are raising awareness

OMG Itsagirl2015 said...

Brilliant post Mr K. Great that even though you are suffering you take the time to help raise awareness.

Life Of a Blind Girl 1 said...

This is such a brilliant post and such an important campaign, well done you!

Kim Carberry said...

This is such an important campaign. I didn't know anything about it until before today! Well done for raising awareness x

the frenchie mummy said...

Such a fab post! I am off to share it now! I hope I am not too late!!!!

john adams said...

Great selfies and wish I had known about this in advance. MD has touched my wife's family (Duchene) and as you know, I used ot work for the Muscular Dystrophy UK (Campaign as it used to be). It is a condition that needs greater awareness and I love how you write about it so openly Martyn.

Pam Lorimer said...

This is brilliant and such a great campaign when there people like me out here who havent heard much about it its good to raise awareness! #BlogCrush

Lucy At Home said...

It looks like I am a little late reading this but what a fantastic movement to be a part of. It is great that you are able to use your blog to raise awareness of this condition, even though I know it must be really difficult to write about. This post was added to the #blogcrush linky so feel free to collect your "I've been featured" badge if you'd like it #blogcrush