My name is Nicolette. I am 21 years old and was diagnosed with Wilsons Disease in October 2023. Wilsons disease has not been known to… Continue reading My Journey with Wilsons Disease
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Sara, a remarkable young lady who embodies the spirit of courage and resilience in the face of a rare neurodegenerative disorder known as Beta-Propeller Protein-Associated… Continue reading Shining Through Darkness: Sara’s Journey with BPAN, a Tale of Strength and Hope
She did not have a name for the longest time; all I knew was that she brought a pain I never knew existed. She would… Continue reading The Stranger that lives between my Bones
My name is Rain, From my earliest memories, I have carried the weight of excruciating stomach pains. These pains stole away the joys of a… Continue reading My journey is one of resilience, self-advocacy, and hope.
Benjamin was about 3 months old when he had his first seizure (that we know of), he was sent to sick kids hospital in Toronto… Continue reading Benjamin’s journey
In the run up to Rare Disease Day 2023 on 31 January at 5.30 CET, we hosted a webinar with guest speakers and medical experts… Continue reading Webinar: How to Raise Awareness Among Healthcare Providers
You might have seen the meme, or remember from science class, that “the mitochondria is the powerhouse of the cell!” It converts food into energy,… Continue reading Being Your Own Powerhouse
In Feb 2017 I had a routine angiogram at Bedford Hospital. I have protein c deficiency (meaning my blood clots without medication) my consultant requested… Continue reading Left to Die due to lack of awareness of celiac Artery Compression Syndrome
2017!! The hardest year of my life, fighting with my own body, doctors and hospitals. That year I had gone away on holiday to Turkey,… Continue reading Losing My Younger Self