Skip to content

You Tube Playlist for videos on Kallmann syndrome & CHH.

I have put together a playlist of videos from You Tube on Kallmann syndrome and CHH.

I have included videos I have made myself and others made by other patients. I will try to keep the list updated with any new videos I find.

You Tube Playlist

The Biggest Missing?

An Anosmic's Diary

If asked to name the smells we miss most, an anosmic Top 10 would be fairly predictable. It would include things like the aroma of freshly brewed coffee, or the cooking smells of food. Bacon in a frying pan was my nose’s favourite hors d’ouvre. Parents would likely bemoan an inability to smell their kids, especially babies. And those in relationships quickly become aware of losing something of their other halves. I soon realised how my partner’s body smell – a kind of odour genome – was so personal, intimate and ultimately, reassuring.

Yet as the years pass, I am increasingly conscious of what is arguably the Biggest Missing of all – experiential loss. Beyond what we try to make of our lives, a great deal of what we call fulfilment is characterised by our experiences of the world around us. The role of smell, while subtle, is often central…

View original post 266 more words

US Kallmann syndrome patient meeting 2017.

We are planning to hold a patient meeting for Kallmann syndrome patients in Boston on Saturday 21st October 2017.

The meeting will be held at the Reproductive Endocrine Unit at Massachusetts General Hospital in Boston.

The meeting will be hosted by Dr Andrew Dwyer and will include clinicians from the Reproductive Endocrine Unit.

The meeting will be a good chance to meet fellow patients in a friendly, relaxed environment and a chance to talk to experienced clinical experts.

The final programme for the meeting is yet to be announced, full details will be announced later.

 

 

Video

Kallmann syndrome video.

This video was posted on You Tube by a Kallmann syndrome. He has written a book “Baggage Claim” about his life and experiences living with Kallmann syndrome.

The video also contains a short clip of the jazz singer Jimmy Scott who had Kallmann syndrome.

I can certainly relate to the point that late diagnosis of the condition can affect not just your physical development but emotional development as well. It is not always easy to catch up on those important developmental years you are supposed to have as a teenager and young adult.

 

I still hate the term “late bloomer”….

Even at the ripe old age of 46 I still hate the term “late bloomer”.

I was stuck with this tag as a teenager. I had to watch my friends and class mates develop into young adults while I was being left behind both physically and emotionally.

Up to the age of 13 I was a fairly normal boy I thought. Not very good at sports, reasonably ok academically, did all the usual things kids did at that age.

Then it all changed, slowly at first, but it did become increasingly apparent I was being left behind. Part of this was my fault as I did not feel the same as everybody else as I had not started puberty. I was invited to the normal teenage parties at first but I kept making excuses about not wanting to go as I felt so much different than everybody else. Eventually the invites stopped coming. I was being left behind both physically and emotionally.

At first I thought, fair enough we all start at different ages, but once you got to 17 or 18 and still had not started puberty it was obvious something was not quite right. I was sent to the doctor by the school nurse but the doctor just dismissed me as a “late bloomer” and told to wait and see.

Even as a 19 year old at University I was being told I was still a “late bloomer”

It was not until I started my first real job after University at the Royal Free Hospital in London that I eventually found out what was wrong with me.

I went to see one of the endocrinologists there. I did not have an appointment, I just went to his office. The first question he asked was “did I have a sense of smell”.

23 years of age and no doctor had ever asked that question before. I said I had never been able to smell. This lead to the diagnosis of Kallmann syndrome.

Mindset Project Podcast – Kallmann syndrome.

Jason Russell is a young Kallmann syndrome patient from Australia. He recently had an interview recorded for a podcast where he talked about his early struggles with the condition and how those experiences have motivated him in his professional work.

Jason is open about his Kallmann syndrome and enjoys the chance to talk to fellow patients. His work not just as a physical trainer but as a motivational and development coach can help fellow patients in their own development. His positive attitude comes through in his work and conversations he has with other patients.

 

 

 

Patient information notes translated into 21 different languages.

Dr Andrew Dwyer is a specialist clinical nurse and research specialist in Kallmann syndrome / CHH based at the CHUV (Lausanne University Hospital in Switzerland). Part of his work was heading a consortium of KS / CHH clinicians and researchers throughout Europe. This has lead to a number of different research projects being funded.

One such project was the development of a comprehensive set of consensus guidelines for the treatment and diagnosis of Kallmann syndrome and CHH which is a useful source of information for both patients and clinicians alike.

Another project was the development of patient information sheets that gave a concise but comprehensive overview of the condition so new patients could learn more about their condition and help to explain the condition to other people.

What makes these information sheets more special is that they were created with input from clinicians, researchers and patient advocates which hopefully has enabled them to contain the information that is relevant to patients while still covering as much of the relevant information as possible.

Once the English language version of the information had been finalised the next step was to produce translations into different languages. The translations were carried out by Kallmann syndrome experts within that country. The name of the person translating each version is listed so patients can contact a Kallmann syndrome expert in their own country.

These information sheets are freely available for anybody to share. They will also be available soon on the GnRH deficiency website. It is hoped that this will be the start of a series of patient led information sources that can help patients access information and interact with other patients and ask experienced Kallmann syndrome clinical specialists questions.

1_English_CHH.KS._PEM

2.Bulgarian.PEM

3_Chinese_common_CHH.PEM_March1

4_Chinese_traditional_CHH.PEM_March1

5_Danish_CHH.PEM 020317

6_Dutch_CHH.PEM

7_Francais_CHH.PEM.15.02.2017pptx

8_German_CHH_PEM_MH_v_corr

9_Greek_CHH PEM

10_Hebrew_CHH.PEM -23.2.17

11_Hungarian_CHH.PEM.EH

12_Italian_CHH_PEM

13_Korean_CHH PEM_revised

14_Polish_CHH.PEM-28.2.2017

15_Portuguese_CHH.PEM

16_Romanian_CHH.PEM

17_Russian_CHH.PEM

18_Serbian_CHH.PEM

19_Slovenian_CHH_PEM_revised 21022017

20_Spanish_CHH.PEM revised 20-2-17

21_Turkish_CHH.PEM

 

%d bloggers like this: