Contact CamRARE

Contact CamRARE

Ellie Cornwell

Member of Unique Feet

Ellie Cornwell

I am a member of Unique Feet and have Kabuki Syndrome. This means I have learning difficulties and autistic features, and I struggle to understand the world around me. People will Kabuki Syndrome are born small and often struggle to grow. We have almond-shaped eyes and button noses. We have round backs and low muscle tone. So this means we can fall over a bit and suffer from aches and pains.
I love being part of Unique Feet as I’ve made some of my best friends here. I love that there are activities for all ages and abilities. No judgement, only fun with friends. I love Challis Gardens and Clip N Climb. I climbed to the top of the wall when I was with Unique Feet. I think this is because being with Unique Feet makes me feel very confident.
I think there should be a lot more support for us when we were first diagnosed. I was 10 at the time, and I felt like nobody understood me or helped me.
Having Kabuki Syndrome is part of who I am, but I think it would be good if they could replace or repair the faulty gene for those who wanted it, but for now, I love being part of Unique Feet.

Rare Youth Voices and Choices

You chose your priorities for the Rare Disease Framework. What would ours be? Young adults living with rare conditions share their priorities for a Rare Disease Framework that speaks for them.

My three wishes for rare disease are: early diagnosis; person-centred care that includes: health, education, social, employment, and wellbeing; and more training for employers and anyone else coming into contact with people who have rare diseases to understand how to behave properly.

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