Kallmann Syndrome - basic introduction.

[plymouthlad38]

Kallmann syndrome is certainly rare, but it is probably under diagnosed. Also you would have to know the term "Kallmann" in order to find these videos.

If I had the time I would make some better videos, but we do have some good information about KS out there now and some good patient groups on Yahoo and Facebook where people can talk to eachother.

[johnpsho14]

Know what? The amount of views on KS videos on Youtube goes to show just how rare our syndrome is.

[shaunbexley]

thank you for this information i have found it very informative as i have been diagnosed with kalmanns syndrome in the last year thanks

[plymouthlad38]

Thank you for your comment, I was hoping these videos would be a useful introduction to people newly diagnosed.

Are there any particular questions you have ? I might be able to help.

Best wishes,

Neil.

[paultasker6]

Neil

Brave man for daring to 'come out' openly about KS. I admire the fact that you have chosen to make this video outlining our condition and you have done so most eloquently. Thank you for mentioning the psychological aspects of the condition because they were the most significant in my own case and always have been. In fact they are central to one's whole concept of identity as you said.

Well done Neil

Paul Tasker

Horsforth

Leeds

[GMPNY]

I think anything you or I say will get the thumbs down no matter what we say :-)

[GMPNY]

Thanks Graeme, he seems very nice and I like him already :-)

Seems like a very kind person :-)

[mishakailana]

plymouthlad38 thank you for posting this video. i hope your channel doesn't get bogged down in arguements as many often do when other people have dissagreements. Still thank you for sharing with the world,, I might suggest adjusting your sound recording level, as it is kind of quiet and very hard to hear you. other then that it is great to see you.

[GMPNY]

I thought the volume was quiet as well so Im glad it wasnt just mer :-)

[plymouthlad38]

I do not know the exact percentages but the majority of people I speak to with KS only found out at the age of puberty. There was nothing to indicate a problem before hand.

A few of us are born with some sort of genital abnormality which makes it obvious there is a problem. However a lot of us go through childhood quite happily until the age of 13 or 14 and then notice something is wrong when puberty does not start.

[plymouthlad38]

....quite agree, all down to personal choice in the end.

Some people with Kallmann syndrome can be intersex.

Some people with Klinefelter syndrome can be intersex.

I don't see myself as intersex but I quite accept that you are and I am quite happy to discuss anything you wish to.

Take care,

Neil.

[GMPNY]

Thanks for the share Graeme ☺

[GMPNY]

Great video, nice to see you and thanks for sharing your info and opinion with the world ;-)

[plymouthlad38]

I have met around 40 people with KS in person and spoke to lots more by phone and e-mail and I can not think of one of them who consider themselves intersex.

We may have issues or problems with sexual development & self image but I do not think as a whole we have a problem with our gender.

It is only going to be my humble opinion as an informed patient but I do not see KS as an intersex condition as a general rule but do not rule out individual people with KS being intersex.

[paultasker6]

Spot on Neil. I've never had any problem with my gender either despite having KS.

[plymouthlad38]

Yes, I am on the Yahoo group, that video reply you posted from the site was my reply to you.

[plymouthlad38]

Yes, I think Kallmann syndrome sometimes can sometimes be classed as intersex but I think this is the minority of cases and not the normal.

Only a small percentage of KS patients are born with ambigious genitalia, most of us reach the age of puberty not realising anything is wrong.

A small percentage of KS patients will unfotunately have problems with their genitals such as micro penis or un-descended testes, and sometimes these people might consider themselves interesex.