My Rare Disease Story

I am Sarah Edwardson, 25 and I have congenital sucrase-isomaltase deficiency (CSID). This is my story.

The struggle

On 5 June 1996, the day I was born, my mother and other professional people noticed that I was in pain. They struggled to find out what was causing me to have these problems, which continue to affect my daily life. When I was a baby my mother kept taking me to doctors but they struggled to find out what condition I had. I kept having pains, including diarrhoea and tummy aches while eating or drinking. Something they contained seemed to be making me poorly. My mother decided to get professional support, including from social workers, community support and doctors. Eventually, my mother reached out to the newspaper and asked for help with her daughter’s condition, explaining I had to go back and forwards to the hospital for assessments and meetings. This brought good news in the end, I discovered I have a congenital sucrase-isomaltase deficiency (CSID), which means I do not have any sucrose or isomaltase enzymes which break down sugars in the food that I eat.

My hopes for the future

I am Sarah Edwardson, 25 and I have CSID. I want to spread the word about CSID so doctors and other professionals recognise it and can be trained to know this rare condition. I want them to help other people as much as they can, to make adults and children more comfortable and better able to cope with their condition in their daily life. I want to get involved with other parents and their children, older people and others that have this condition. I would like an awareness day and the law changed to allow access to public toilets and easier access to professionals, to ease frustration. 

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