We need a website to allow men with hypospadias to get access to infomation about thier condition; and to build up a communioty of those with the condition - at present it is almost impossible to chat with or meet another with this condition.
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Many men with hypospadias report that they were never able to find out what condition they had. They were therefore unable discuss the condition - or how it affected them - with a doctor or their parents. And a lot of them feel they would have avoided some of their negative feelings about themselves as they grew up if their parents had taken the time to discuss this issue with them when they were boys. Many parents who have a boy with hypospadias find it difficult to talk to the child about it: to a father, it may seem like he has failed his son in some way; or he and the boy‚Äôs mother may just be too embarrassed to discuss the condition with their son. Certainly, part of the problem is the way the condition is diagnosed: most parents first hear the word ‚Äúhypospadias‚Äù immediately after their son‚Äôs birth, when the paediatrician announces there‚Äôs a ‚Äúproblem‚Äù which needs further examination. The first step for parents of a new-born son with hypospadias ought to be to obtain more knowledge about the condition. Information about hypospadias, what it looks like, how often it occurs in the population, and its possible effects on urinary and sexual function will provide a basic understanding. A draft of a pamphlet we are hoping to produce is available. We are working on a website containing resources for people with hypospadias. Many people have told us how vital it is to talk to others who have been affected by hypospadias and to exchange experiences. Although hypospadias is relatively frequent, people do not find it an easy subject to discuss. Consequently, parents with sons who have hypospadias, and men with the condition can feel very much alone and isolated. In this case, the internet can be a real source of help and support. And it‚Äôs undoubtedly helpful for parents to talk to adult men who have hypospadias, whether or not they‚Äôve had surgery, and to hear their stories. This can help parents understand the physical and emotional effects of hypospadias, as well as showing them how men respond to hypospadias and adapt to living with it. Perhaps more importantly, it also helps parents prepare for the questions which their son may ask about his hypospadias at different stages of his physical and emotional development. If parents are knowledgeable about hypospadias and the possible consequences for their son‚Äôs physical and emotional well-being, and they are able to talk this through with him, there‚Äôs a much better chance that he will be able to understand why he is ‚Äúdifferent‚Äù. This sort of discussion helps a boy to understand more clearly what he might expect as a male with hypospadias and, therefore, manage his own life in the most positive manner. An outline specification for the website, which is being built by Anytimeafter9.com, Is available.
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