The best way to care about someone or something is to share knowledge with or about it. This is just one of the reasons I started writing. However, before I jump ahead I need to revisit the day I received my diagnosis’s. I was diagnosed with FHL1 Gene Mutation a rare form of Muscular DystrophyContinue reading “To Care is to share!”
Category Archives: Muscular dystrophy
Who are you?
How would you respond if I asked, “Who are you?” While the question may seem simple, it can also be a deceiving and complex one. You would of course answer to the best of your ability, the same as I would, but if for argument sake what if I also offered “what ifs.” For instance,Continue reading “Who are you?”
Facing the physical transitions
Transitions are a part of life from the moment we’re born. We go through puberty as teenagers and our bodies change. We move out of our parents’ place to go to university or start a new job. We get older, some of us have kids, and our perspectives change. When living with Muscular Dystrophy weContinue reading “Facing the physical transitions”
How to avoid falls
Some of you may have experienced a drunken fall on a night out, managed to get up, brush yourself down and move on with barely any scrapes or bruises. I may not have fallen in years, but I can still very clearly remember every fall I had. Where it was and how much time itContinue reading “How to avoid falls”
Reflections in Colour – Muscular Dystrophy UK
Muscular Dystrophy has always been very close to my heart, with my mum being diagnosed when I was a child and then myself when I was 24 with the same rare form of Muscular Dystrophy a progressive muscle wasting condition. So i’m sure you can imagine I was very honoured and excited when my friendContinue reading “Reflections in Colour – Muscular Dystrophy UK”
Life isn’t fair, but I can make the best of it
If we lived in a fair world, Muscular Dystrophy would not exist. But that also goes for all diseases, yes? Unfortunately, life isn’t fair. Life has a way of dealing you cards you wouldn’t of picked for yourself, I was diagnosed with the muscle-wasting disease 18 years ago. Even with an uncertain future, there’s noContinue reading “Life isn’t fair, but I can make the best of it”
I am ready to move forward after my second jab
I am officially vaccinated up! Twelve weeks ago i had my first dose, i can finally say that on April 21st, I received my second dose of the AstraZeneca COVID-19 vaccine. According to AstraZeneca who confirms 100% protection against severe disease, hospitalisation and death in the primary analysis of phase III trials. Like most vaccinationsContinue reading “I am ready to move forward after my second jab”
An open letter to muscular dystrophy parents
It’s easy for me to sit here writing about my experiences when it comes to living with muscular dystrophy but what about the parents that live though every fall, slip, hospital appointment. Muscular dystrophy can affect all ages at any point in life. Whether your child has been living with muscular dystrophy for years orContinue reading “An open letter to muscular dystrophy parents”
