Rare Diseases - @ashleystuart94

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"I am Ashley and I am from Canada. I was diagnosed with idiopathic intracranial hypertension (IIH) in 2018 just a few months after I completed my university degree. IIH is also known as Pseudotumour Cerebri. Looking back, I am pretty sure that I actually had symptoms of IIH during my final semester of my university degree and it almost prevented me from finishing it. The symptoms of IIH actually mimic that of a brain tumor but no tumor is present. Very severe headaches are the most common symptom. I like to describe the headaches as it feels like your head is trying to give birth to your brain out the back of your neck. It can also feel like your brain is being squeezed really tightly. Spreading awareness about IIH is so important as so many people do not know what the condition is, let alone what I experience daily with this condition. IIH is a chronic invisible illness. I look fine on the outside, but it sometimes doesn’t match how I am feeling on the inside. This necklace will always be a reminder that I must put myself and my health first. I actually make videos on YouTube about my life with IIH. I started making YouTube videos so my family could learn what my life was actually like with IIH as my social media often only shows when I’m feeling good. I quickly have learned that by sharing my story and by sharing what I go through with IIH that I can help others feel like they are not alone." @ashleystuart94

Rare Disease

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