Sheffield patient has the answers to help families as first councillor

Retinal Dystrophy sufferer Emily Clare from Millhouses who is a counsellor for Genetic Disorders UK and a supporter of Jeans for Genes
Retinal Dystrophy sufferer Emily Clare from Millhouses who is a counsellor for Genetic Disorders UK and a supporter of Jeans for Genes

Emily Clarke was just six years old when she was diagnosed with a genetic disorder affecting the retinas in her eyes.

Despite losing her central vision - making faces, words and places difficult for her to recognise - her ambitions were undimmed, and her diagnosis sparked an interest in genetics.

So after finishing school, Emily, from Millhouses, went on to study the subject at Newcastle University before completing a master’s degree in genetic counselling at Manchester University.

For the last year the 31-year-old has been working as the first ever genetic counsellor for Genetic Disorders UK, a charity which helps children suffering from inherited conditions.

Her role involves supporting and helping families with everything surrounding the disorders, which cover a vast range of illnesses such as cystic fibrosis and haemophilia.

It is estimated that one in every 25 children have a genetic illness, or will develop one at some stage in their lives.

Emily said: “Genetic disorders can be quite rare and isolating for families who are struggling to find out information about their child’s condition and not being able to find anything out by searching Google. Another important aspect is putting people in touch with each other.”

She added: “After working in the NHS for three years I was exploring my options. I started helping with enquiries and it built from there. That was last September and I officially started in July.”

On an average day she will provide a vital helpline to help people deal with issues after being diagnosed with a genetic condition, such as managing feelings of guilt, talking about disorders and how to get educational support.

“People are looking for supporter information. They may want to know how they might be able to get genetic testing or how they are able to find out about the conditions in children.”

To overcome her disability, Emily uses special software to magnify and read out documents from the computer. Often she needs an assistant to look up information and attend conferences with her.

She said: “The most rewarding part is being able to have a conversation with somebody who is worried and hasn’t been able to get answers anywhere else. It’s not just general information. It’s tailored to their situation.”

But despite her experiences, Emily does not share too many details about herself with callers, preferring instead to focus on their issues. She is about to take on a similar role for the Macular Society.

“The conversation is about them and not about me.”

n Emily is encouraging people to wear their favourite pair of jeans, in exchange for a donation, on Jeans for Genes Day next Friday, September 18. Visit for details.