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Rare Connect Forum.

May 22, 2014

https://www.rareconnect.org/en/community/kallmann-syndrome

Rare Connect is an organisation that helps to promote the understanding of rare diseases and helps patients to come together in a community to be able to talk to each other and exchange information.

It is organised with the help of EURODIS (European rare disease organisation) and NORD (National Organisation of Rare Diseases, based in the US).

To work along side groups already on Yahoo and Facebook it will provide a platform for helping patients get in contact with each other.

There is also the opportunity for online forums or real time video discussions (Webnair) where we can invite KS experts to appear on webcam to answer questions posed by patients on line in a form of virtual patient support group meeting.

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3 Comments
  1. Anonymous permalink

    Hi, Neil Smith

    I am suffering from a very slow growth, I am 22 years old but I look like a 15 year old boy. I have 2 older brothers both of them had facial hair at 16-17 yeas of age and normal growth, but in my case up till now I haven’t got any facial hair except some peach fuzz on my chin which is barely noticeable. I can masturbate normally and my sex drive is normal I assume. I have little pubic hair and very little and light underarm hair. I have normal smell sense. I haven’t had any blood check or hormone check. I am desperate because I don’t think the doctors will know my problem. I think I have low testosterone levels, because I haven’t reached full puberty till this date. I don’t even know how to explain my problem to the doctors. I just want to have Testosterone Replacement Therapy, I think this is the treatment that will make my life much better. I want your opinion of what do you think I should do. I’d appreciate your help.

    Many Thanks
    Anonymous.

    • Hello,

      Thank you for your message.

      You will need to ask your doctor to check your hormone levels. At the age of 22 your testosterone levels should be high. You will need to ask your doctor to check the levels of:

      Testosterone
      LH
      FSH
      Prolactin
      SHBG

      If the LH / FSH levels come back at low it might mean you need to be seen by a endocrinologist, a doctor who specialises in hormone deficiencies, for further tests.

      Your doctor will not be able to prescribe testosterone replacement therapy until you know what you testosterone level is at the moment. You did not mention if your testes have grown at all. If they have grown you might have delayed puberty, if they have not grown significantly since childhood it could suggest a condition called hypogonadotropic hypogonadism, which would require you to take testosterone replacement. You would have to see an endocrinologist in order to get checked over thoroughly.

      If it is found you have low testosterone at the moment going onto testosterone replacement should make you feel better and there are number of different methods of taking testosterone therapy, mostly in the form of gels or injections.

  2. Anonymous permalink

    Hello Again,

    Many Thanks for the reply. I just went to a health center today to have my blood test. I explained to the doctor from what I suffer. I asked him to measure my testosterone level, The doctor checked my Testes and he didn’t say anything at all. My Testes and Penis size are normal I assume. The doctor drained three tubes of blood from my vein. He said the result of the check would take 2 weeks, because it has to be sent to a lab in a hospital.

    The only thing I am afraid from the Testosterone Replacement Therapy is the infertility complications.

    Thanks, I’ll be sure to inform you about the results when it comes.

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