ISSN 1470-3947 (print) | ISSN 1479-6848 (online)

Endocrine Abstracts (2019) 66 PENS1.3 | DOI: 10.1530/endoabs.66.PENS1.3

Patients living with CAH

Sue Elford

CAH Support Group, Bedford, UK

Since my son was born (32 years ago) the monitoring and treatment for patients with CAH has improved considerable, with multidisciplinary teams providing excellent care from birth. It is still pretty scary for parents when they are given the diagnosis but they are able to access information on the condition, not just from their hospital team but also via support groups and the internet. Social media has enabled them to chat to other families online which can help them feel less isolated (although on occasion can cause more worries too, as not all information online is helpful or accurate). On the whole though, families are better informed and children born with CAH today have every chance of progressing ‘normally’ and due to medication being more finely tuned nowadays and new preparations available, they have less side effects to contend with. Injection kits are now also provided routinely for patients with CAH and training is given for parents/family members too, usually by helpful endocrine nurses at regular intervals. Although probably seldom used, an injection kit is also usually provided for schools too, When this became standard some years ago, endocrine nurses did try and visit schools and give injection training to teachers too but in recent years this has become unsustainable and is not only considered unsafe practice (as teachers leave, children change schools etc) but is also not good use of NHS resources. This has caused some upset amongst families who worry this puts their child at risk in school. However, a good care plan, advising schools of what to look out for and with the child listed as ‘at risk of adrenal crisis’ with their local ambulance service, the child should receive prompt expert attention, which should be perfectly sufficient to keep a child with CAH safe.

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