Support and education to end shame and isolation


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AIS-DSD Conference

Mark your calendars! This year, HEA will have its' conference in conjunction with the AIS-DSD Conference in Cincinnati, Ohio. The dates are July 31 through August 1. Please go to attached link to register. Please mark that you are with HEA as we will have a few separate groups. Upcoming AIS-DSD Conference

Welcome to Our Internet Community

Did you know that 1 of every 125 males born in the US has hypospadias? If you consider all children born with a difference of sex development (DSD), the incidence is about 1 in 100.

That's about the same frequency as being born with red hair! The frequency of occurrence differs by country, but hypospadias is a common birth difference all over the world.

The point is that this very common congenital difference affecting the urinary tract and genitalia is virtually unknown to the general public. Hypospadias (HS) is kept secret, because people don't talk about those parts of their bodies involved in elimination and sex. Unfortunately, the secrecy causes some serious problems.

Epispadias (ES) is a separate congenital difference affecting the urinary tract, bladder, genitalia, and pelvic structure. It is sometimes accompanied by exstrophy, where the bladder (and sometimes other abdominal organs) are not enclosed within the belly at birth.

Epispadias in males is much less common than hypospadias in males. Female epispadias is even less common and female hypospadias is very rare.

However, like male hypospadias, these conditions are kept secret because people don't talk about congenital differences of the penis, vagina, urethra, or bladder. Secrecy is almost always associated with emotional problems.

Hypospadias and epispadias have medical implications that range from mild to very serious. The emotional, psychological, and social implications are often even more serious than the medical ones and can affect people throughout their lives, from infancy to old age.

  • For people with hypospadias or epispadias, the secrecy can be associated with feelings of being deficient or damaged, in addition to feelings of anger or rage, depression, and shame. Parents may struggle with guilt, even though they are not responsible for their child's condition. Everyone is impacted by the secrecy associated with genital and urinary differences.
  • Most people with hypospadias or epispadias have never met or talked to anyone else with one of these conditions. Parents of children with HS/ES are in the same boat. Isolation adds to the serious complications caused by secrecy.

Hypospadias and epispadias come about because some cells and cell systems develop differently from the way they typically develop in the human fetus. Contrary to popular news reports, the causes of these conditions are not yet known.

People with hypospadias or epispadias have the same worth as all other human beings. They are not deficient and have no logical reason to feel shame, but the secrecy and isolation surrounding all birth differences involving the urinary-genital systems often lead to the development of feelings of deficiency, shame, anger, and depression.

How does HEA help?

The Hypospadias and Epispadias Association, Inc., offers support so that people with HS/ES never need to feel alone. People with HS or ES and their families can use the resources we offer to make informed decisions about surgery, relationships, and sexuality. Our message board, chat rooms, shared stories, and conferences ensure that no one needs to feel isolated, deficient, or shameful.

We provide opportunities to develop pride in ourselves and compassion for others by sharing our stories, reaching out to others in our community, volunteering to serve by becoming members of the HEA board or committees, advocating for better care and better choices, and educating the public.

What is HEA?

The Hypospadias and Epispadias Association, Inc. (HEA) is an organization founded in the year 2000 for the support and education of people born with hypospadias or epispadias and their families, loved ones, and medical care givers. Although HEA is based in the USA, we invite participation from all people in all countries who have an interest in these congenital differences.

Want to get in touch with us? Go here.

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