Abuse of Human Rights
in Congenital Adrenal Hyperplasia and Related Intersex Conditions
and with holding of information on surgery.
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
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.
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
- 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
- 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
- Religions should accept Intersex people not shun,
- 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.
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.
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
© Adrenal Hyperplasia Network 2001