Rare Disease Day
For more information about Rare Disease Day make sure to check out the official website as well as charities like Dreams Come True who do such an incredible job supporting those that are rare.
I have not had the chance to complete exams or experience many milestones that teenagers and young adults have. I didn't
In 2014 my life changed. On holiday in Tenerife, I went on a boat out to see the dolphins, we had the chance to trapeze into the sea, being the person I am I jumped at the chance! Unfortunately, as I hit the cold water and gasped for air I swallowed a large amount of sea water. This gave me a severe gastritis.
Every day I see my son create bonds with people on the street, I see people's faces light up, just by his smile. Although his smile belies a troubled heart. It's so easy to believe that everything's okay.
When you look at this child what do you see? That's the question photographer Ceridwen Hughes is posing with 'The Rare Project
How do you get the general public's attention rousing interest in a rare chronic disease? As a patient advocate and ambassador for Gaucher disease, I have written about every aspect imaginable of living with a rare disease.
If you're untouched by such a condition; never judge people, treat everyone equally, understand these conditions, but never pity them, encourage government/media/corporate investment in removing the social barriers in our way, and simply help normalise disability.
I'm now on a plant based, gluten free, sugar free, high nutrient, anti-inflammatory, juice infused, smoothie obsessed, rotation diet. I very rarely eat anything out of a packet (even if it fulfils my diet criteria), and I spend most of my daily energy on preparing my food. I have slip ups (it's normal when you make such dramatic changes), but I know that what I'm doing is right for my body.
So, today, on Rare Disease Day, I'd like to take the opportunity to share some quick things that millennials (ugh) living through their teens and twenties with chronic illnesses will know. I hope that this will serve to help people be more understanding and aware of what they can do to support their friends and loved ones who fight every day for their health.