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How to handle living with KS. A patient’s experience.

January 11, 2018

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.

How to handle living with KS. A patient’s experience.

Another question which was asked to me was: How do I handle it mentally?

(Warning also a long post, boil the kettle and have a cuppa or tea or your favourite beverage)

Before teenage years I looked similar to every other boy (just shorter) which I did get picked on a fair bit by bullies, that’s another post. During the teenage years I fell behind, hormonally (thanks Jase we already knew that), lacked hair where hair was meant to grow, voice was still high pitched and libido was no where in sight; more interested in cake and sports.

KS is mentally tough and tiring and quite messed up. It warps our beliefs, opinions and thoughts on ourselves, seek acceptance from others instead of ourselves, have negativity and fears that are not real.

Where do I begin ? I could write forever just on this!! ill try to be as short as I can (being 5 foot 2 short is the only way I know how) but add as much value as I can.

It is sooooo important for anyone to look after our minds (especially us), as times can get tough, thoughts can get dark. Our thoughts on us with KS can get the better of us.

You can feel very isolated thinking you are the only person in the world who has this. It’s where groups like this are quite amazing at connecting us together.

Can feel very violated with doctor check ups and folding around an area you only want your loved one to be feeling around.

Can feel very confusing and worrying when everyone else is progressing physically and we are not.

It’s important that we speak to someone else about our challenges (Yes guys and girls it’s ok to talk, mainly looking at the guys coz so many of us, yes including me have been too proud early on to talk to someone) this helps share the load and its easier to carry our challenges because they are out in the open and someone else can share an unbiased opinion or thought and can help

Something else that helped me mentally, was through sport and gym. Played tennis and cricket for years. It was good to focus ALL my energy on something I was passionate about and got decent at and took out my frustrations from being bullied into the game and kick the other players butts!

NOW it’s more so in the gym and training to be the strongest leanest and most confident person I can be so that KS does not affect me as much as it used to

Late in my 20’s I started reading books which I perceived to be “self help” because I thought I was broken and needed help. PS: YOU ARE NOT BROKEN AND DO NOT NEED TO BE FIXED. YOU ARE PEFECT THE WAY YOU ARE, NOW MAKE THE CHANGES THAT YOU WANT TO MAKE

TO BECOME THE PERSON YOU WANT TO BE that is under your control.

I love reading, and I love writing. I write to be able to share experiences with you all and help those who maybe struggling with things and need a different perspective (neither right nor wrong but just different)

I found finding your passion can help massively. Finding out what you love doing, helping others, learning as much as you can and being the best version of yourself. Listing everything that you love about yourself. and not giving a rats ass about what other people think of you only YOUR opinion counts, mine doesn’t even matter to you, if you agree with my opinion its because YOU see it also

Your mind can be your best friend OR it can be your worst enemy choose to use it wisely.

 

Jason’s Facebook page.

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We have a number of Kallmann syndrome patient groups on Facebook, with various privacy settings. They can be a good way of interacting with fellow patients from around the world and share experiences and questions about the condition.

Kallmann syndromer’s Group on Facebook.

This is the largest of the groups on Facebook. Its privacy setting is “closed” which means other people can see the group and who is a member of the group but they can not see any of the posts within the group.

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