Links to other useful sources of information about CAH.
Please note, the Support Group cannot be held responsible for any of the content that these other sites may hold unless explicitly stated.
Information about CAH
BSPED aims to improve the care of children and young people with endocrine disorders and diabetes mellitus by bringing together professionals from a range of disciplines. Visit the ‘Clinical Resources’ section to find Patient Information about CAH.
Some useful resources from the CARES Foundation in the USA as well as other sources worldwide. Includes links to information about CAH in languages other than English.
A 5-minute infographic/sketch style video that explains key aspects of CAH.
Explain was developed as part of a project to improve communication between young people, their parents/carers and healthcare professionals in endocrine clinics. Explain was designed to help young people affected by various endocrine conditions talk with doctors and nurses, while also providing them with accessible information about those conditions.
Adrenas’ goal is to provide a safe and effective gene therapy treatment for adults and children living with classic CAH through the ADvance-CAH gene therapy program.
A 5 minute video which explains key things about CAH using a sketch format – this video is also featured on our homepage.
A 10-minute cartoon-syle video that explains the key points of CAH – very informative for all!
The Society for Endocrinology is the UK home of endocrinology. They bring together the global endocrine community to share ideas and advance the discipline of endocrinology.
A web-based project by the Society for Endocrinology that aims to give patients and the general public access to reliable online information on endocrine science.
Adrenal Crisis Resources
In an emergency, people with adrenal insufficiency (such as CAH, Addison’s disease) or anyone who is “steroid-dependent” may experience symptoms of extreme weakness, a significant drop in blood pressure, drowsiness or mental confusion. This is known as an “adrenal crisis” (or “Addisonian crisis”). It is a medical emergency and must be treated immediately with extra steroid medication immediately.
Clinical guidance as well as links to the NHS Steroid Card and Sick Day Rules.
Guidance from the ASHG about how to spot and treat an adrenal crisis, as well as some guides about administering injection kits.
A short video from Liverpool University Hospitals to educate patients with adrenal insufficiency around the management of their steroid replacement therapy. Guidance on how to administer injections starts at 5min 35sec.
Living with CAH
As a Support Group we’ve had many suggestions over the years that can help make ‘living with CAH’ a little easier. We’ve listed some suggestions below . Note – these are not endorsements and we are not in any way affiliated with the companies or organisations listed.
Some ideas about storing, transporting and even reminding you to take your medication.
- Tabtime – Offering ‘medication management solutions’ such as alarm watches and pill boxes to help with managing your regular medication.
Medical ID Jewellery
Medical ID jewellery helps to communicate medical information simply and quickly in an emergency to first responders, paramedics and doctors. We’ve listed some suppliers below.
Employment & Flexible working
Work has plenty of challenges at the best of times, and having a flexible employer can help to make things a little easier.
Other Support Groups
The home of our Canadian counterparts.
CARES Foundation is a nonprofit organization committed to improving the lives of families and individuals affected by Congenital Adrenal Hyperplasia (CAH) in the USA.
dsdfamilies was set up as an on-line resource about DSD conditions by two parents – Ellie and Laurie – in 2011. The objective was to provide a reliable and practical source of advice from both peers and doctors, and to have the chance to exchange ideas which were open-minded and, at heart, optimistic.
The Congenital Adrenal Hyperplasia Support Group Australia (CAHSGA) was formed in 1985. They work to improve knowledge and services for those affected by CAH. They are a small not for profit group run entirely by volunteers.
CLAN was founded in Australia by Dr Kate Armstrong after learning about the plight of children living in Vietnam with Congenital Adrenal Hyperplasia (CAH). The group is dedicated to the dream that all children living with chronic health conditions in resource-poor countries of the world will enjoy a quality of life on par with that of their neighbours’ children in wealthier countries.