Muscular Dystrophy and fatigue

Fatigue is the bane of my life! Having a rare form of muscular dystrophy that’s a progressive muscle wasting condition fatigue can be a huge part of my life but what is fatigue and how does it affect people with Muscular Dystrophy. It’s a feeling of extreme tiredness, exhaustion and a lack of energy. ButContinue reading “Muscular Dystrophy and fatigue”

What having Muscular Dystrophy feels like

Muscular Dystrophy still a very misunderstood condition, if you are familiar with the muscular dystrophy then it’s probably easy to tell if someone has it. But unfamiliar you could easily mistake it for something else like MS say. I can’t tell you the amount of times this has happened to me! However, muscular dystrophy affectsContinue reading “What having Muscular Dystrophy feels like”

Technology and disabled People

Technology is pretty much at our fingertips no matter where we turn these day, from Smart speakers, new smartphones coming out each year, cars with built-in wifi, and music and television can be accessed from almost anywhere. To some the idea of being unplugged and off grid can seem like something that exists only inContinue reading “Technology and disabled People”

As an adult with Muscular dystrophy, i have a responsibility.

I have always said our superpower is having the ability to share our experiences. The older i get i feel a sense of responsibility to the next generation growing up. Or not yet living with Muscular dystrophy. As an adults with myofibrillar myopathy a rare form of muscular dystrophy I do believe we should helpContinue reading “As an adult with Muscular dystrophy, i have a responsibility.”

Dear Muscular Dystrophy: Thank you for making me, me.

It’s my birthday, it’s okay I’m not expecting a surprise birthday party or for you all to sing me happy birthday showering me with gifts! As most of us are still grounded I’m thinking celebrating all month is completely acceptable. Yes?! As each year passes me by I like to make small changes or adjustmentsContinue reading “Dear Muscular Dystrophy: Thank you for making me, me.”

Choose to change!

It’s almost our day ladies! International Women’s Day is approaching that fast it’s tomorrow. While i think you should celebrate yourself every day, International Women’s Day is a great opportunity to reflect on being a woman while celebrating our achievements especially in a world that doesn’t really see us, disabled or not. This day isContinue reading “Choose to change!”

Yes I am rare!

Have you heard of Rare Disease Day? No, well you’re in luck because it’s today. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases, the campaign also seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone whoContinue reading “Yes I am rare!”

Life lessons I’ve learnt being disabled

Spoiler alert: Being disabled means living in a society that wasn’t designed with mine or other disabled people’s needs in mind. That first sentence may sound rather harsh but in reality very true, there is no other way to describe it from a disabled person’s point of view – It can create difficult situations, andContinue reading “Life lessons I’ve learnt being disabled”