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Personal update.

January 15, 2014


We have two patient meetings coming up this month (one in Newcastle and one in London) which I am both nervous and excited about. I am always keen to meet and talk to fellow patients of all ages. I like being a patient advocate for my condition and I do get a degree of satisfaction in trying to help other patients if I can. I am only nervous about these meetings because I want to make sure people get something from them and it has been worth their effort in attending. We are small in number but the condition must be under diagnosed. I hope most people who attend enjoy the chance to talk to fellow patients in person. KS / CHH is such a difficult condition to explain to even close friends and family, it is sometimes only fellow patients who can understand some of the issues in having the condition.

Many KS / CHH patients will not see the need for such meetings and do not feel the need to communicate with other patients. I do see their point of view and it is very good when people do not let KS / CHH dominate their lives and are able just to get on with things. My only concern with some of the patient groups we have is that we do not hear enough from the KS / CHH patients who are happy and content. Early diagnosis and treatment are so important with this condition and you can see the results of early diagnosis in how some people take control of the condition far better than others can.

I enjoyed my recent trip to the States for a patient meeting and to meet friends. I hope to be able to go back soon. Ideally I would love to attend a patient meeting in Australia or NZ, if I can find somebody to pay for the ticket out there.

I am on a fertility trial at the moment, it has taken a long time to get on to the trial, almost 14 months in fact. It is for a new form of treatment which should in theory work a lot quicker than the currently available treatments. At present male treatments can take up to two years to be effective, this new form of treatment is designed to work within six months. Early indications are promising. It is hoped that eventually this form of treatment will be available for use in younger men with KS / CHH when first diagnosed where it could be particularly effective.

More than enough talk for now…..I am always happy to talk about KS / CHH, a bit too much perhaps.


From → Personal reviews

  1. Brian permalink

    I recently found your blog, good stuff. I am 34, diagnosed with KS in the mid 90s and for 20 years now been happily taking the same meds and visiting a doctor once a year. When I started dating my wife I told her that I would not be getting her pregnant without a lot of help. She started researching adoption and fertility treatments this past year and convinced me that it was a good idea for her to stop taking birth control for a year so we could later demonstrate that we were indeed infertile (apparently that is the definition).

    To my great surprise, she was pregnant three months later. I have quite a long physiology education and I understand the hormonal aspects of KS well enough. I’m also pretty certain I have KS, can’t smell ANYTHING, etc… Sure glad she was on birth control when we were poor college students though….

    Won’t see my doctor again for some months to ask him. But I’m wondering if you’ve ever heard of something like that?

    • Yes, I have heard of this happening before.

      It might depend on which meds you were taking. If you have been taking hCG / Pregnyl at anytime it is quite possible that you could produce sperm.
      It does depend on your FSH level. Lots of men with KS will have FSH levels of zero or just above zero. These men will not be producing any sperm.
      However some men with KS will have low, but detectable levels of FSH, between 0.5 and 2 which can generate low levels of sperm production, especially if Pregnyl or hCG is used in treatment. If you are on hCG it will induce the production of natural testosteron which could stimulate sperm production if there is even a low level of FSH present.

      Some men with KS will have a small amount of testicular development due to this low level of FSH and they are termed “partial KS” patients. If the testes are 4 ml or lower then normally no sperm is produced, but anything other 4 ml could indiciate a low level of sperm production. Most men with partial KS would have seen some small amount of testicular increase while the majority of men with KS would have testes of 4 ml or smaller.

      You would have to have a sperm test to confirm and a blood test to check LH and FSH levels but this situation is not unique.

  2. jay permalink

    Hey. My names jay, im 22 years of age and scrolled past this page. Ive never really talked to people about this other than doctors but i was diagnosed with k.s when i was 12. Started treatment very early having fortnightly inj, and noticed that because i did, puberty wasnt to bad for me, mind you i did tend to shy away alot. I was very self conscious and didnt like showing my body. i had no testes and my ‘private’ at the age of 15 wasnt as big as i thought it should be. my body mass though i was bigger than anyone in my school year due to the injections and most people thought i was 20. i thought it was cool at the time but as i got older i became more aware of my body and how its different from normal. Ive had gf’s in the past but since my last relationship of 5 years ended, Ive sort of become shy again. I virtually have no testes and i wouldnt say im hung like a horse but i tbh i dont really mind anymore. In my years of treatment ive only met 1 other person with k.s and that was when i was 16 and he was 40, we didnt talk much but at the time i just wanted to know if you could live a normal life with this condition.
    Anyway thought id just drop in and say hi. Havent done it before so why not now lol.

    • Hello Jay,

      Good to hear from you. Thank you for posting.

      Early diagnosis does help with this condition I think. I have met plenty of people with KS / CHH and I would say I have always found it a rewarding experience. I enjoy the chance of talking about the condition in the hope other people get know about the condition and hopefully get an early diagnosis.

      I think you can lead a normal life with this condition, but it can be hard at times, especially if you can not form relationships. That part of my life has passed me by. I have had a good education and a job that pays the bills but I have never been able to have a decent relationship. I am socially shy but can open up in the right company.

      You can get gonadotropin injections which could increase testicular size and induce fertility if that is a path you wish to go down. I am on a clinical trial at the moment for fertility injections.

      Are you on Nebido now ? or some other form of testosterone.

      Always happy to talk to fellow patients. Drop me a line if you wish.

      Kind regards,


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