This year for Rare Disease Day we are shining a light on rare diseases. Why is this conversation so important? I was 17 years old when I was diagnosed with a rare disease, one that my life had been deeply impacted by from 8 years old, an illness that till then I’d been living with …
At 17 I went from hearing to deaf within a couple of months, we still don’t why there was such an extreme decline so quickly or if with my form of nerve damage if cochlear implants will be an option in the future. I never would have imagined at the beginning of 2020 that by …
When I was younger I took teakwood lessons. My teacher, another big role model of mine growing up. Taught us about the five tenets of Taekwondo. Courage, integrity, perseverance, self control and my personal favourite indomitable spirit. “Indomitable spirit is that part of a person which makes them unique, that part of a person which …
Rare Disease Day 2021 Today I’m joining with millions of people around the world in raising awareness for Rare Disease Day and #showyourrare. Last year I was diagnosed with Hypermobile Ehlers Danlos Syndrome also known as HEDS, a genetic, lifelong degenerative illness. That affects the collagen all throughout my body, causing issues with every system. …
Dear 2020, You’ve certainly been one hell of a year, one that will not be forgotten by anyone. You turned everyone’s lives upside down and filled them with isolation, pain, uncertainty and anxiety. You’ve shown us our strengths and our weaknesses. Our lack of connection to one another and our sense of community. How our …
Its hard not to feel angry when symptoms are ignored by medical professionals or recomended treatments create new problems and or take away more quality of life. If you don’t follow their treatment your seen as uncompliant. You need psychiatry to get over your “fear” of said treatment. But no one says anything when it …
Nostalgia :”a sentimental longing or wistful affection for a period in the past” Toxic vs positive nostalgia, is it poss for nostalgia to actually become toxic? And how do you know when it has? How can such a heartfelt and sentimental aspect if life cause us pain? I know personally reminiscing on my favourite memories …
To my younger self, I just want to start off saying I’m sorry, I’m sorry for everything that’s happening to you, I’m sorry that for a long time no one but your mum will believe you, when you say something is wrong. And I’m sorry for hating you for so long, It was not you …
You know those people that come into your life and completely turn it upside down but in the best possible way? That’s what it was like meeting Laura Pena, a very talented film maker , speaker and the founder of She Is The Universe. An incredible docu series that’s led Laura to travel around the …
Disclaimer – this post is not intended to bash doctors or the medical system, merely to bring to light the treatment millions around the world face on a daily basis. In honour of Rare Disease Day I wanted to cover a topic most aren’t often aware is an issue. That being the treatment of chronically …