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 …
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. …
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 …