Country: United Kingdom
LGMD Sub-Type: LGMD2A / Calpainopathy
At what age were you diagnosed:
I was diagnosed when I was 23 years old.
What were your first symptoms:
I had a fall in a garage, dislocated my knee and that wouldn’t repair itself in the time expected.
Do you have other family members who have LGMD:
Yes, my older brother also has LGMD.
What do you find to be the greatest challenges in living with LGMD:
My greatest challenges are climbing stairs and trying to get people to understand how hard it is to be an ambulant disabled person that is determined to stay on my feet as long as possible. (and wobbles a bit)
What is your greatest accomplishment:
Realizing that I could write about Muscular Dystrophy and people listened too! I’ve gone on to raise awareness and vital funds for research, attending the houses of Parliament, making sports and TV personalities aware of these conditions via social media, being recognized and rewarded by MDUK for all my efforts to raise awareness and funds for research, changing my career to be in a position of helping others, being a dad to three great girls, trying to be a good role model and to stay positive all of the time.
How has LGMD influenced you into becoming the person you are today:
Quite ironically I think that LGMD has made me stronger than what I ever thought I would be, I am extremely determined to let everyone know all about these conditions and make life easier for many others in the future.
What do you want the world to know about LGMD:
That it exists would be a good start! It was not until my diagnosis and years later when I started to talk about the condition that it occurred to me that my family, friends and society in general had not heard of ANY type or strain of Muscular Dystrophy and that has to change; it’s imperative that people know about these conditions.
If your LGMD could be “cured” tomorrow, what would be the first thing that you would want to do:
To run on a beach as fast as I possibly could (think of the film ‘Chariots of fire’ and to the Vangelis soundtrack too!) and then have the biggest hug with all my girls and my wife.
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