Kallmann Syndrome

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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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    Depression and Kallmann syndrome #KallmannSyndrome

    There is not too much I can say and I doubt I can put it into words properly.

    This month I lost a fellow friend with Kallmann syndrome.

    He took his own life. He was only 22 years old. He was younger than the age was when I was diagnosed. I spoke to him on line only a few days before and I noticed nothing untoward in the conversation.

    I know he suffered from depression. I tried to help the best I could but we lived in different countries. He had family and friends around him who loved and cared for him deeply.

    Having Kallmann syndrome, not going through a normal puberty and adolescence was not the whole reason for his depression perhaps but it was a significant contributing factor I think.

    The psychological side of Kallmann syndrome, missing out on puberty, is often overlooked in patients I think. Sometimes it seems to be a case of once the hormone levels are restored to normal, then everything will be back to normal.

    I try to raise awareness of our rare condition, but like other rare conditions it can be an uphill battle

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    Kallmann syndrome #KallmannSyndrome #puberty #RareDisease

    Happy to take part in Rare Disease Day to help to tey to raise awareness of my own condition and the other rare conditions out there.

    It does get frustrating that you have to explain what your rare condition is and still people do not understand what it is.

    Interacting with fellow patients can be so important in being able to talk about your rare condition.

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    Kallmann syndrome - Invisible condition

    I have Kallmann syndrome, it is a rare condition. However I do not look ill.

    I am overweight, but that is my own fault and no fault of the condition. So nobody can tell I have a rare condition. Before treatment I looked young for my age but that has improved since being on treatment.

    I have to take testosterone since I did not go through puberty and can not make my own without taking medication. If I ever wanted to have children I would have to take another form of medication.

    In a way I am fortunate having Kallmann syndrome has no painful physical symptoms or any reduction in life expectancy. If I stay on treatment there is no reason why I should not be perfectly healthy.

    Nobody can tell I have medical condition unless I get into an intimate situation, when it then becomes more obvious. That part is hidden. Even though I am now on treatment, I still still did not go through a normal puberty so I am still underdeveloped in that area.

    Also hidden are the psychological affects of not going through puberty and adolescence at the same time as anybody else, which has made emotional and physical relationships difficult.

    #puberty #KallmannSyndrome
    #testosterone  #Infertility

    Post

    Rare disease information on the internet.

    One of my pet hates is the the internet meme "Do not confuse my medical degree with your Google / Internet search."

    Thankfully I have never physically met a doctor who has tried this on me but I have heard stories from fellow patients where similar thoughts have been expressed.

    Patient advocates can help fellow patients with internet searching to allow patients to ask their doctors informed and relevant questions at appointments.

    With any rare condition it should be a two way process when doctor and patient can learn about the condition together.

    The idea that "doctor knows best" is not always true.

    #RareDisease #puberty #PatientAdvocates
    #KallmannSyndrome  #testosterone

    Post

    My invisible condition - Kallmann syndrome / no puberty.

    I have Kallmann syndrome. To anybody else, I look like any other regular person perhaps a few years older than my real age.

    I was termed a "late bloomer" when in fact I never went through puberty at all. Hormone replacement therapy now has helped with some of the physical development and at least I look at bit older but I still am still underdeveloped physically and emotionally.

    I am still infertile, though that could be corrected with specialist hormone replacement therapy.

    I am shy, prefer my own company and find it very difficult to be around other people socially or at work. Nobody can see why I should be shy and quiet and it is really only fellow patients that can understand how I feel.

    Missing out on both puberty and adolescence has left a big hole in my life that I have found impossible to fill.

    #nopuberty #KallmannSyndrome #latebloomer #testosterone #MyCondition

    Post

    Living with a rare condition.

    Having a rare condition means you can sit opposite a health care professional and say to your self that you know far more about your own condition than the person opposite you.

    Ideally, it should be a two-way process where you can both learn more about your condition as you share information you have found by talking to fellow patients.

    The worst case scenario is to meet a doctor who does not take the time to listen and dismisses any outside information as total rubbish #KallmannSyndrome #PatientAdvocates

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    Social anxiety

    #SocialAnxiety #Isolation #KallmannSyndrome
    I only feel totally relaxed when I am around fellow patients who share my rare condition, Kallmann syndrome.

    I find it very difficult to be among people, shopping or just travelling about. I do prefer to be on my own and have my own space. I think the lack of physical and emotional development I have due to missing out on both puberty and adolescence still affects me to this day.

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    Having an invisible rare condition.

    #puberty #KallmannSyndrome #TestosteroneDeficiency

    I have Kallmann syndrome which meant I never went through puberty. Outwardly it does not appear I have a medical condition. I used to look very young for my age before diagnosis but with testosterone driven hair loss that has changed a bit.

    One annoying thing about the condition is that it is difficult for others, apart from fellow patients to understand it. Even when you do explain it a lot of people think I was just a late starter and all is normal now, somehow overlooking the fact I have to take life long testosterone therapy and am infertile.

    Post

    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