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Our Mission

HEA is committed to providing the following services to our members, friends and the general public:

  • We create and nourish a community that erodes the isolation and shame brought about by hypospadias and epispadias.
  • We act as a center of information and experience for parents and adults who are considering the available treatment options.
  • We provide a forum for an open exchange of information between the hypospadias/epispadias community and our health care providers.
  • We educate the public at large about the prevalence of these conditions and remove their stigma.
Support and education to end isolation

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Election of HEA Board, updated 1/9/2012
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Chat Room Is Working, 1/9/2012
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DEEP UNDERSTANDING: The HEA Website Project, 1/9/2012
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Video of Tiger Devore,
updated 12/28/2011
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Antuanettekl Private Message Is Spam, 12/23/2011
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Latest HEA Newsletter Online, 12/4/2011
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March 2012

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Psychological Effects of Genital Abnormalities

by an HEA member

There has always been a distinction between how a person themselves feel about their DSD condition and how their parent or health professional feels.

I have heard comments from on lookers, however close and well meaning, that suggest, "it is no big deal, just get on with it." Well from a personal point of view I would say that the ability to get on with it and may well depend on the particular psyche of the individual and how they have been educated to understand their particular condition.

Statistics show that a young man with hypospadias, for instance, is likely to be much older than a control group before he has sexual intercourse for the first time. However good he feels about himself there is a tendency to hold back before becoming too intimate. Of course there are those who seem to get along just fine and that will depend on their make up as a balanced person, but in general there will be a slowing down in relationships as they become established and intimate.

Secrecy is damaging and a disadvantage, especially in this day and age. Quite a few young people have said recently that they told their friends about their need for more surgeries and when asked went into detail about their particular condition. They all said that their friends had been supportive and concerned and that their relationships were better after everything came out than before. One young man said his male friends now joked and said that they now understood why he was the only one in their group still a virgin. That is the sort of comment you can accept with a smile and shows an openness among friends and in my opinion is a positive thing.

The unfortunate habit of some parents to keep things under wraps and never mention the DSD can result in a person not being aware of the name of his/her condition and also thinking that they are the only one like that and some sort of freak. That is why they never tell anyone and this can include doctors who might help and hold at arms length possible close contacts who might have become partners in life.

These reflections are based on people who did not have a professional psychologist involved in their case, but even in countries where it is common to refer to a psychologist, it still needs one who specialises in these conditions. So many health professionals ask, "What is that and did you come to be born like that?" Not very encouraging.

Finally, I would say that from a personal point of view, places like HEA and other support groups can help individuals to talk about and come to terms with a condition that hitherto was very private and was holding back the chance to get along and have a normal life.

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