Abuse of Human Rights in Congenital Adrenal Hyperplasia and Related Intersex Conditions


 

 

  • Secrecy and with holding of information on surgery.  Secrecy about the fact that the genitalia might have been ambiguous at birth.  Secrecy that the genitalia were operated on in infancy.  Secrecy about the nature of the operation, e.g. removal or reduction of the clitoris.

 

  • Genital surgery performed without informed consent of patient as done as a child for more sociological acceptance than real medical need.   Cosmetic genital surgery performed on infants, with no evidence that the surgery is necessary, and evidence that it could be damaging.

 

  • Potential sexual damage of this cosmetic surgery, not discussed with the parents and patient.  Also evidence that infant vaginal surgery has poor results and 85% babies will need more surgery, and this is not discussed.

 

  • Parents / patients not given all the facts and implications of early surgery / surgery. Vaginal reconstruction surgery is rarely medically necessary until puberty but may be required before start of menstruation.

 

  • Clitoral surgery should only be done with informed consent of the patient not at wishes of parents or medics for social reasons as it might cause major damage to sensate function.  Clitoral surgery should only be done in extreme circumstances (such as penile phallus that is causing psychological upset) and all steps to avoid clitoral surgery should be taken.

 

  • Access to specialists in Intersex field should be available to all as it is very postcode based at present to whom gets good treatment.

 

  • Access to specialist surgeons who have experience of Intersex surgery should be available because surgery probably has poorer results if in-experienced surgeons are doing it.

 

  • Parents can be pushed into early surgery by medics and family.

 

  • Insufficient psychological support available to help cope with lifelong, life threatening rare conditions and the Intersex issues of either living with different genitalia, surgically normalized / damaged genitalia.

 

  • Psychological support is essential and is not widely available.   Psychological support for parents and families will be even more important if families opt not to have surgery as they will need great help with bringing up a severely virilized girl until she is old enough to make her own decisions about surgery. There is no information available about the psychological effects of not having surgery either.

 

  • Recognising that there is scanty information on long-term results of treatment (surgery and medical treatment) and that research is necessary and greater access to funding for this is essential.
  • Intersex should not be held against you in life and work.

 

  • Religions should accept Intersex people not shun, castigate, ignore.

 

  • Lack of awareness of long term, lifelong steroid effects that can cause Osteoporosis, weight gain, high blood pressure, headaches, eye problems, fertility problems etc.

 

  • Lack of education to parents / children / patients / medics and the public regarding Intersex conditions. This makes it difficult for society to accept Intersex.  Intersex people are often seen as 'freaky' and made to feel outcast from society.

 

  • Difficulty in getting siblings other family members screened due to tests not being widely available.

 

  • Doctors performing un-consented photography, because Intersex is seen as a fascinating phenomenon, sometimes with the patient being made to stand naked against a wall - breaking the fundamental rules of medicine - first do no harm, as this is immensely damaging psychologically.

 

  • The temptation for doctors to submit patients to unnecessary tests, investigations and photographs, without telling them that this is not necessary for the management of their condition, but is purely for the doctors own interest or “research”, again because Intersex is a fascinating condition for doctors.

 

This document was submitted to the Northern Ireland Human Rights Commission in 2001.

© Adrenal Hyperplasia Network 2001

 

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