For those of you not aware, this week is Spinal Muscular Atrophy (SMA) Awareness Week! SMA is the name given to my disability. So it made sense to write something about it and raise some awareness myself 🙂
The cause of SMA is all rather sciency. And no its not related to the baby milk brand. Basically when 2 people carrying the gene (not necessarily having the disability itself) have a baby there’s a 1 in 4 chance the child will have SMA. Remember the dominant and recessive gene classes in year 8 biology? That’s how we get the 1 in 4 probability.
Anyway there’s between 2000 and 2500 of us living with the condition at any one time. There’s 3 types of SMA too – very logically they are type 1, type 2 and type 3. They follow a scale of more affected to less affected.
If you have more general questions I recommend watching this video
See if you recognise the voice over guy too… Holywood beckons me? :-p
I have type 2 SMA. So I’ve never walked, I require a lot of personal care support (for dressing, eating, drinking, hygiene, turning at night and so on), I use an electric wheelchair all day, and various other technologies (a lifting hoist, adapted car, electric bed, etc).
I struggle to focus on what I can’t do though. All seems counterproductive to me. Naturally I have to understand my limitations and maintain my solutions. But mostly I focus on what I can do. As you already know I enjoy a rich social life with family/friends, running my own business, and travelling the world with my soul mate.
As a child my family and I used the charity Jennifer Trust for SMA whenever we had difficulties. They would provide great information, advice and support. Plus I met other people just like me at their conferences and social events.
They’ve now become SMA Support UK. Continuing similar services to great effect and funding research related initiatives, just with a new name. Alongside them are the SMA Trust who fundraise for research around treatments for SMA.
It’s worked out really nicely that they both fund a project called the Adult Insight Group. A project that I run independently in my role as CEO for Disability Horizons. In this group I chair the meetings that enable us adults with the condition to share life’s challenges and experiential solutions. Last night we shared views on sex and relationships. It’s a no holds barred kind of thing. We’ve also discussed independent living, travel and working. If you are an adult with SMA and would like to join – please email me on firstname.lastname@example.org.
I’m now professionally working with the charities I was helped by in the past. Pretty cool hey!?
So if you have a few quid please consider giving it to these charities. You’d be helping out a lot of families and individuals striving to simply live a normal life. Without the funds things like research, advice on complicated government funding or medical support, plus vital everyday equipment will be removed from the people who need it most.