Who we are

The CAH Support Group is run by people who, between them, have been living with CAH for over 100 years! We’ve been providing support to people living with CAH as well as raising awareness of the condition since 1991.

The Support Group

The CAH Support Group exists to:

  • Give support to everyone living with CAH – those with the condition, their familes and friends to name a few.
  • Increase awareness of the condition to the medical profession and the public
  • To raise funds to support research

The Group’s Committee is made up entirely of volunteers, some of whom have CAH themselves. The Group is also supported by a network of Medical Professionals from across the country.

The Group hold regular conferences and informal meetings around the UK,  and a newsletter is sent out at least twice a year.

Our current membership stands at around 400 families and 150 professionals and our key to success is getting information to where it is needed as soon as possible after the need is recognised (i.e. at diagnosis when this time is crucial).

If you are at all affected by the condition, please consider joining as a member. With your support we can make sure that others affected by CAH get the support they need.

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You can read all the books and see all the doctors, but talking to someone who’s actually been there and understands how you feel is a huge reassurance.

Patient Charter

We believe that people with CAH should have the following facilities available to them, irrespective of their age group or geographical location within the United Kingdom.

  • They should be under the care of a specialist who is experienced in the management of CAH. This may be a paediatrician/paediatric endocrinologist/adult endocrinologist or reproductive endocrinologist.
  • The facilities available must include easy access to laboratories measuring the important hormones in CAH, including 17-Hydroxyprogesterone, androstenedione and renin estimations.
  • Every parent of a child with CAH, or person with CAH, should be informed of the relevant support group(s).
  • If genital surgery is considered necessary, it should be performed by a surgeon who is experienced in genital reconstruction in children. This may be a paediatric surgeon/urologist/gynaecologist. Follow-up of gynaecological problems in both adolescence and adult life should be made available. Prior to any decision about surgery, support from a multi-disciplinary team should be offered and the full implications of any surgery discussed.
  • Counselling should be given for the emergency treatment of intercurrent illnesses with appropriate written instructions given. These instructions and the necessary teaching should be repeated at intervals

 

  • At the time of diagnosis, genetic analysis should be attempted and a referral made to a Genetics Department to discuss antenatal diagnosis and antenatal treatment.
  • People with CAH and their families should have access to specialist support as appropriate including clinical psychologists, child and adolescent mental health services (CAMHS), adult mental health services, and counsellors. This specialist support should begin preferably at diagnosis and be available throughout all stages of care.
  • There should be long-term seamless care throughout all age groups between childhood, adolescence and adulthood.
  • For adults with CAH, there should be access to infertility treatment for women, counselling available by a clinical geneticist, appropriate testing of members of the family, and bone densitometry available to assess osteopenia/osteoporosis.
  • Men with CAH should also have regular ultrasound scans for monitoring of TART (Testicular Adrenal Rest Tumours).
  • Every parent of a child with CAH, or person with CAH, should be offered access to a second opinion in the event of their being unhappy about their/or their child‘s management. In the event of inadequate control, a blood endocrine analysis/profile and renin should be available.
The CAH Support Group would like to thank Dr Richard Stanhope for his help with preparing this document.