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 …
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 …
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 …
I still can’t believe I finally get to share this, I had honestly given up all hope that I would ever get a diagnosis. But on the 21st of January 2020 at 11:00am I received my diagnosis! I have Hypermobile Ehlers Danlos Syndrome, a genetic connective tissue disorder that effects every system of my body …