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”

Mental health – let’s talk

Mental health is something that I have spoken about and been very open and honest about my own struggles but it has been awhile – Right now our mental health and wellbeing is a topic that we really need to be addressing, so with no better time like the present. Let’s talk. Unfortunately mental healthContinue reading “Mental health – let’s talk”

Muscular Dystrophy – keeping your muscles moving!

Exercising, easy right? – as simple as putting on your lycra outfit, sweat bands and saying ‘okay let’s do this’ with Olivia Newton-John ‘let’s get physical’ playing in the background. But how realistic is that for many disabled people right now? Especially at the moment if your unable to do any exercise or get outsideContinue reading “Muscular Dystrophy – keeping your muscles moving!”

What advice do you wish someone would’ve given you as a disabled person?

It’s a question i have sat (pun intended) pondering about many times, what advice could i give myself or wish someone would have given me when navigating or transitioning from the non-disabled into the disabled world and in all honestly even now. There is no wrong or right answer as the advice can be given,Continue reading “What advice do you wish someone would’ve given you as a disabled person?”

I can now see an end

I am going to try and keep this as short and sweet as i can because i know there are still so many disabled and non-disabled people waiting for the vaccine and i know from my own experience as much as i was delighted to see so many friends get their jab date it wasContinue reading “I can now see an end”

Part 2 – Struggling to access a smear test? What you can do.

Last week I spoke openly about the barriers to cervical screening for all genders with a disability/impairment – for something that is classed as a routine procedure and offered to all genders with a cervix from the age of 25 there is still huge barriers to over come before we get it right for everyoneContinue reading “Part 2 – Struggling to access a smear test? What you can do.”

My advance care plan

Advance Care Plan – the conversation no one wants to have, but really should be having – is there a misconception of what this booklet actually is? I am fully aware that death will come for me at some point in life especially living with a rare form of Muscular dystrophy a progressive muscle weakeningContinue reading “My advance care plan”