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 …
Tag: Ehlers Danlos Syndrome
Draling With Medical Resentment
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 …
A Letter To My Younger Self | EDS Awareness Month
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 …