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Telling other people about Kallmann syndrome.

February 28, 2011

I have never regretted telling somebody about my Kallmann Syndrome, but I am a little selective in deciding who I tell in person, but I am quite happy to talk about it to anybody and I put my name out on the web and in You Tube videos. Part of this is to help people find out about this rare condition and if it helps them achieve an early diagnosis I am happy to put my name out there. The other reason I like talking to people may be a selfish reason, or it might be a cathartic reason, but I like being able to talk to people and help them if I can just by being there and talking to them.

The only noticeable feature to most people will be the lack of sense of smell. This does get noticed from time to time at work, but it is never a real issue. My main job is in a blood transfusion laboratory, so there are times when people notice that I do not smell certain chemicals, but it has never caused a problem yet. Nobody is going to link not having a sense of smell with a failure to start puberty. There is actually a very strong link between the two which I have talked about on other web sites.

One of the biggest issues with Kallmann syndrome is the isolation you get as a patient. It can be a struggle sometimes to get doctors to take you seriously. There are very few KS specialists in the UK who have the experience and knowledge of treating patients with KS. One of the major hurdles we have to overcome is the “wait and see” approach or “you are a late developer” attitude when all the other symptoms are there.

I do appreciate GP’s have a difficult job and after seven years of medical and post-medical school training I am sure they do not always appreciate their patients coming into their surgery with a print out from WebMD or a Daily Mail article. However they could at least listen to us sometimes and accept that there are rarer conditions out there which they might not have come across yet. With Kallmann syndrome getting diagnosis & treatment early on in the teenage years makes a huge difference in later life.

A key point in coming to terms with having KS, in my humble opinion only, is being able to put a name to the condition, knowing that you are not alone in not going through puberty correctly and there are other people out there who have the same condition. I appreciate having the chance of meeting other people with the condition and I hope it helps them as much as it helps me. A lot of people with KS never meet anybody else with the condition and just the opportunity of meeting and talking to a fellow patient can be a great relief.

  1. paul conibeer permalink

    I completely agree Neil being able to put a name to the condition and knowing that you are not alone is certainly a very liberating feeling it certainly was for me at least!
    I too enjoy meeting and talking with fellow ks sufferers as i find nobody else can or could understand some of the more delicate issues that we face so much is taboo but knowng that you have other people you can talk too that have been through similar experiances is invaluable great blog btw.

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