Two of our members have given powerful personal accounts of life with CGD for the website ‘Telling Stories, Understanding Real Life Genetics’.
This new resource, developed for healthcare professionals, employs the real life stories of patients and their families living with genetic conditions. The site's approach is to allow the affected person to describe in their own words how their condition first emerged, the response of general practitioners and caregivers to symptoms that had often never before been seen, and the often long road to specialised care and treatment. The stories provide valuable case studies to help nurses, midwives and other medical professionals understand the real life issues involved with having a rare genetic condition. It will serve as an educational support tool for training of NHS nurses. The website is user-friendly and intended to help the general public as well as health professionals to understand and appreciate the relevance of genetics and the impact a genetic illness can have on the daily life of patients and families. The stories about CGD are among many other personal experiences posted on a variety of genetic conditions. They provide a vivid testimony of the needs of rare disorder patients in the context of general health provision within the NHS.
Please log on to www.geneticseducation.nhs.uk/tellingstories/genetic_condition.asp to read first-hand the contributions from the CGD community.
IMPORTANT NOTE :
The information contained on this website is intended only as a guideline, not as a substitute for medical advice. Always consult your doctor if you or your child has any CGD symptoms or concerns.
© 2001-2007 The Chronic Granulomatous Disorder (CGD) Research Trust
Registered Charity No. 1003425 email:cgd@cgdrt.co.uk
The CGD Research Trust is a member of the Association of Medical Research Charities (AMRC), the Genetic Interest Group (GiG) and an associate member of the International Patient Organisation of Primary Immunodeficiencies (IPOPI)
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