This NY Times story talks about how one single woman, now going by the name Cheryl Chase, has tried to lobby doctors, scientists and other intersex patients and their parents for changes in the way patients with "disorders of sex development" are treated.
In most situations, especially if the external organs are malformed, surgery is offered as a way to make the genitals look "normal". Ms. Chase's arguments are that most such people grow up eventually to be emotionally and psychologically scarred and it is likely that despite the malformed genitals, if the individuals are allowed to grow up with them, they may have a better life, including sexual satisfaction.
Her lobbying has had an effect, and she is part of a consensus statement on this subject as well.
This is one more example of how patients can get involved, exercise their rights, show everyone issues from their points of view and get changes made.
Obviously, intersex is associated with a large number of thorny emotional problems. Doctors land up playing God and in that setting the perspective of people who have been through these problems and solved them would help in letting care-givers know how to proceed in the future. Thus guidelines are framed not just from the practice/scientific viewpoint but also from that of the patient.
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