Patient Experiences

We asked patients a few questions about what it was like living with a rare disease. This is what they told us.

“The thing I have found most helpful is the huge well of help, advice and support from others who are battling their own rare diseases. We truly are stronger together. And together we can accomplish miracles.”
Robert Jolliffe

“The thing I have found most helpful is my dual-trained canine partner and guide dog ‘Vegas’, who is a world first! She has stopped me being housebound and has transformed my life. She makes me more confident and breaks down barriers between myself and others within society.”
Steph Read

Lucy Jones with her daughter Izzabelle

“The thing we found most difficult was when Izzabelle was first born – our local hospital had no idea of what was wrong with her and couldn’t give us any answers.”
Lucy Jones

“The thing I have found most difficult is the isolation, being alone and no one knowing what pain it causes physically and mentally.”
Georgina Davies

“The thing I have found most difficult is that not many people are able to help in the many ways needed, as they aren’t able to understand fully what we are going through.”
Ellie Haylock

“The thing I have found most difficult is waking up every day feeling like you have run a marathon; it hurts on so many levels and seriously no one understands!”
Andrea Draper

Daniel Lewi’s daughter Amelie and wife Patricia – with Micky Mouse

“Our rare disease hasn’t stopped us from having a happy family home. We do not let the disease define our daughter and we make sure she has a happy and full life.”
Daniel Lewi

“Her rare disease hasn’t stopped my child from being a beautiful, engaging and charming young lady; nor did it stop me from loving her unconditionally. But it is the enemy within and lurks constantly in the shadows.”
Becky Jenner

“My rare disease hasn’t stopped me from being a wife, a mother to two young boys, working full time and enjoying life day by day without worrying about the future.”
Vicky Rokingham

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