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