Are you studying to become a health care professional?

Are you interested in continuing to develop your knowledge and skills base within a health care setting?

Do you teach on a health care pre-registration/undergraduate course or post-registration training programme?

If you’ve answered ‘Yes’ to any of these questions then the Telling Stories, Understanding Real Life Genetics website is for you.

Telling Stories is a free, web-based resource developed to promote understanding among all health professionals of the impact genetics has on real life, and its relevance to healthcare practice. The website draws on stories that cover a range of genetic conditions including single-gene disorders, chromosomal abnormalities and multifactorial conditions.

Since the start of 2010, twenty new stories have been added from patients, carers, family members or healthcare professionals covering a range of conditions including Huntington disease, myotonic dystrophy, spina bifida and heart disease. Read our new stories – listed below – to learn more.

Abi’s story Turner syndrome is just a small part of who I am

Amy’s story Questioning my life choices, past, present and future – Hypermobility syndrome

Annie’s story Having a child with fragile X

Ben’s story Living with facioscapulohumeral muscular dystrophy

Bethany’s story ‘We did not put limits or labels on him’: Fragile X

Charlotte’s story Cerebellar ataxia – my daughter’s story

Eileen’s story A mother’s tale: ‘They were just normal children’ – Niemann-Pick Type C

Elaine’s story Prompt referral is crucial! Mucopolysaccharidosis

Gareth’s story ‘Be more sensitive to our needs’ – Congenital Adrenal Hyperplasia

Hugh’s story ‘Sitting on a time bomb’- Myotonic Dystrophy

Janie’s story ‘I would certainly have been a completely different person’ – Spina Bifida

Jasmin’s story A mother’s struggle for support – a rare chromosome anomaly

Jonathan’s story ‘Something you’ve got to learn to live with’ – familial hypercholesterolaemia

Kay’s story) Treat Rose as Rose, not a child with Costello syndrome

Lilian’s story Living with Fanconi anaemia

Nancy’s story Huntington disease in the family

Non’s story Me and my sister – Muscular Dystrophy

Philippa’s story ‘At last we had a name’ – chronic granulomatous disorder

Ruby’s story The most important patient at the clinic – Turner syndrome

Steve’s story A family history of cardiac events