Smell This For Me, Will You?

Living That Kallman's Life KS ~ HH ~ Anosmia

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The trickle-down hoax on full display.

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What is Kallmann syndrome ?

What is Kallmann syndrome ?

What is Kallmann syndrome ??

Kallmann syndrome is a rare genetic hormonal condition that causes puberty to fail to start or not fully complete.

Kallmann syndrome affects both men and women but is more commonly diagnosed in men.

Kallmann syndrome is associated with having no sense of smell (anosmia)

Kallmann syndrome is a form of a condition that is also known as congenital…

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Psychological Aspects of Congenital Hypogonadotropic Hypogonadism.

Psychological Aspects of Congenital Hypogonadotropic Hypogonadism

A link to a recently published article in Frontiers of Endocrinology. The psychological aspects of Kallmann syndrome is an area I am particualrly keen to explore as I feel it gets overlooked as health care professionals concentrate on the treating the physical effects of absent puberty and infertility.

A better understanding,…

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Frequently asked questions with Dr Andrew Dwyer, Boston College, USA.

Frequently asked questions with Dr Andrew Dwyer, Boston College, USA.

      In October 2017 I met with Dr Andrew Dwyer of Boston College, USA to talk to him about Kallmann syndrome / CHH. Dr Dwyer is a senior nurse practitioner and clinical researcher who has worked in KS specialist centres in Boston and Lausanne, Switzerland and had published many papers on Kallmann syndrome.

We recorded a series of three videos where I asked him some of the most…

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UK Guardian article on Kallmann syndrome patient.

UK Guardian article on Kallmann syndrome patient.

The Guardian newspaper in the UK posted an interesting article about an American KS patient who had just undergone fertility treatment.

Guardian article.

It is always good to have the condition mentioned in a national newspaper. I am always keen to try to raise awareness of this rare condition.

Early diagnosis and treatment can help a lot with both male and female patients but there is a lot…

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Clinical Trial for Kisspeptin Test in London.

Clinical Trial for Kisspeptin Test in London.

A clinical trial in London for Kisspeptin test.  Kallman’s syndrome / Congenital Hypogonadotropic Hypogonadism (CHH) is a condition that is frequently due to a problem with the function of an important part of the brain called the ‘hypothalamus’.   Kisspeptin is a naturally occurring hormone (already present in the body) that was discovered in 2003 and is known to be able to be able to safely…

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Survey results for Kallmann syndrome / CHH patients.

Survey results for Kallmann syndrome / CHH patients.

Over the past couple of months, I have placed online anonymous surveys in the Facebook patient groups. The idea was to gain an idea of the experiences and opinions of fellow Kallmann syndrome / CHH patients and try to see if there were any shared experiences.

Since Kallmann syndrome / CHH covers a broad spectrum of symptoms with different severities there should be some differences, especially…

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2nd anonymous online survey.

2nd anonymous online survey.

2nd online anonymous survey

The second survey, totally anonymous. You should be able to see the current results when you have completed the survey. Thank you to those who have completed a survey already.

I will post full results when all the surveys are completed.

2nd online KS / CHH survey

This is a link to the preliminary results of the first survey after the first 100 responses. I will post…

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[kallmanconfessions]

We had a fire in my building tonight ...

... and the alarm in the hallway was broken. The only reason I knew something was going on, was that I happened to wake up and see the flashing lights of firetrucks outside. Only my girlfriend was able to smell the smoke.

Luckily it was a small facilities fire, put out easily and everyone in the building is ok. But I'm still seriously freaked out. If it had been something worse, with the alarm broken, I probably wouldn't have noticed anything in time. Usually Anosmia doesn't really faze me, but it's moments like this that I realize the full implications.

Anyway, apparently it still smells like smoke in here so that's fun...

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Radio interview with KS patient from Australia.

Radio interview with KS patient from Australia.

Jason is a KS patient from Australia. He is very happy to share his story of Kallmann syndrome and is very keen to contact and help fellow patients from around the world.

Jason is a professional fitness and motivational coach. This radio interview is a story of his experience with Kallmann syndrome growing up in Australia. Having been bullied in early life Jason turned his life around and used…

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Kallmann syndrome meeting in Turkey.

Kallmann syndrome meeting in Turkey.

https://www.facebook.com/kallmannsendromuvakfi

https://www.facebook.com/hipogonadizmorg

I recently had the pleasure of attending a Kallmann syndrome meeting in Istanbul, Turkey.

The meeting was organised by a KS patient living in Turkey who wanted to raise the awareness of the condition in his country. The professionally organised meeting was attended by patients, press & media and…

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Communicating with other patients.

Communicating with other patients.

In addition to 4 main groups on Facebook there are other ways of connecting to fellow KS / CHH patients.

One new way is on the Discord platform which allows text and voice chat, either in groups or privately. We have set up a dedicated channel for KS / CHH patients.

https://discordapp.com/invite/c98Ubh

You do not need to be a gamer to use the service, anybody can join up and talk to other…

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Rare Disease Day 2018 - 28th February. Kallmann syndrome story.

Rare Disease Day 2018 – 28th February. Kallmann syndrome story.

Rare Disease Day 2018 consists of a series of events coordinated by the European Network for rare disorders and aims to highlight rare disorders. It is partnered by rare disease organisations around the world including Rare Disease UK and the National Organisation for Rare Disorders (NORD) in the US.

These organizations provide support for patients with rare disorders and help raise awareness of…

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Kallmann syndrome patient story – Jason Russell.

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Has KS made it harder to be in a relationship ??

Jason Russell is a professional fitness trainer and mind and body specialist in Australia. He also has Kallmann Syndrome. This is an extract from a post he made in one of the KS Facebook groups recently. Jason is keen to help fellow KS patients and would be happy to talk to fellow patients.

Has KS made it harder to be in a relationship ??

Right at the start, when everyone else was getting into…

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