kallmann

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    The hidden side of Kallmann syndrome / hypogonadotropic hypogonadism - missing out on puberty and adolesence.

    Kallmann syndrome (KS) is a form of hypogonadotropic hypogonadism (HH). It affects puberty and fertility.

    People with KS / HH do not undergo normal puberty and will normally be infertile.

    Hormone replacement therapy can help with some of the physical symptoms and there is even specialist treatments available to help induce spells of fertility.

    It is the pyschological aspects of the condition that concern me more at the moment. I talk to and meet many fellow patients and it is the perhaps the pyschological aspects that cause the most problems to fellow patients regardless of their age of diagnosis or treatment.

    As with most rare disorders it is difficult to discribe to others what it is like to have the condition. Puberty and adolescence are such cornerstones in the development of the individual to miss out on them must leave lasting effects I think.

    Having late puberty, being a "late bloomer" can be bad enough. However to be left behind totally is even worse. To be told to wait and see when you are a teenager as your friends develop physically and emotionally around you is not easy.

    In my own situation I had a normal enough childhood, nothing seemed amiss, apart from my poor hearing and lack of sense of smell. At the time nobody linked this to my lack of puberty. If they had, I may have been diagnosed earlier than 23 years of age.

    Socially i think I was a normal enough child but as a teenager I became more and more socially isolated. Through my own fault, I see now. I was invited to events with my teenage friends but as I grew older I felt more and more distanced from them. I began to turn down invitations because I felt so out of place. Eventually the invitations stopped totally.

    Since I did not go through puberty, I felt physcially out of place as well as socially out of place. The doctors just said "wait and see", so I did. This was just before the internet age. I knew I was missing out on relationships and indeed even sexual relationships while a teenager or later at University. I just assumed it would all catch up eventually.

    I concentrated on other things, I was not un happy as a young adult but perhaps I modified my personality and behaviour to make up for feeeling out of step of my age group. I did not learn the social skills or notice the signs of potential relationships. I developed my own traits to appear normal enough to function, trying to forget other things in life.

    I was not diagnosed until I was 23 and it was not until I was about 25 that my hormone levels (testosterone) reached that of a normal male. What happened next is another story that i would be happy to share another time.

    #kallmann #puberty #hypogonadism #BodyImage #Infertility #Sex

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    Kallmann syndrome is not the same as delayed puberty (or I am not a late bloomer).

    A common theme with rare disorders is the delay of diagnosis.

    I was seen as being a "late bloomer" when I had not started puberty by the age of 16. Even though I had two of the extra symptoms, lack of sense of smell and poor hearing, I had to wait until I was 23 before I got the correct diagnosis and was put on testosterone treatment.

    Late diagnosis and treatment can make such a different to fellow patients.

    Even with treatment patients do not experience normal puberty and would require extra treatment if fertility is desired.

    One issue patients can experience is that we are mixed up with "late puberty" patients. Some people assume that after treatment all is normal.

    Delayed puberty patients can experience normal puberty after a short course of treatment and will experience normal puberty and be fertile. Patients with Kallmann syndrome (male and female) do not experience normal puberty, will need life long hormone treatment and require specialist hormone treatment if they wish to be fertile.

    #testosterone #kallmann #puberty #Infertility #latebloomer

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    A rare condition that is embarrassing to talk about.

    I have Kallmann syndrome, a form of hypogonadotropic hypogonadism which causes puberty to fail, which in turn mean patients are normally infertile.

    It is not a well-known condition and I was dismissed as a "late bloomer" or "late developer" even at the age of 23 after I had left university.

    It is not an easy condition to talk to anybody about, the lack of physical development makes people feel shy and isolated and can have difficulty forming emotional and physical relationships. Even with treatment we still do not go through normal puberty and remain infertile unless we have expensive, difficult to obtain specialist hormone replacement therapy.

    Even when diagnosed it is not an easy condition to talk about amongst friends or family due to the very private nature of the condition. The fact that the condition also causes infertility can increase the need to keep the condition private in some family situations.

    All this makes raising awareness of the condition more difficult. As a patient with the condition, I can see why my fellow patients do not wish to talk about their condition to others and I totally agree with them.

    However, I do like talking about my condition and I refuse to be embarrassed just because I have this condition. I am happy to talk about my condition with anybody to help raise awareness. Early diagnosis and early treatment can be very beneficial.

    #kallmann  
    #puberty  
    #Rare  
    #testosterone

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