Welcoem to posts!!
in the future - u will be able to do some more stuff here,,,!! like pat catgirl- i mean um yeah... for now u can only see others's posts :c
Various forms of treatment available for #kallmann syndrome. Each have their own advantages and disadvantages.
Ovitrelle is a form of the hormone hCG which can produce natural testosterone production. While the Ovitrelle pen is primarily used by females the dose can be adjusted for male use.
Nebido is a testosterone undecanoate injection, also know as Aveed or Reandron.
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There are two topics when talking or writing about Kallmann syndrome / CHH that can cause the most problems or are most mis-understood.
The first is Kallmann syndrome / CHH is not the same as delayed puberty.
The second is the genetics of Kallmann syndrome / CHH. There are very few clear cut answers when it comes to the genetics of KS. Unlike some chromosomal conditions the genetic testing for Kallmann syndrome / CHH is complex and rarely gives a clear yes or no answer.
Current there are over 60 different genes, each with many different variants that have been associated with causing cases of KS / CHH. No one genetic test can possibly cover all these. Over 40% of cases still have an unknown genetic cause.
The diagram belows shows some of the more common genes known to cause KS / CHH but there are many more.
The one important gene is KAL1 (or ANOS1). This was the first discovered and the most pathogenic or disease causing of the genes.
Apart for KAL-1, it can take two or more genes working together to cause a case of KS / CHH, which is one reason why it is so rare.
KS / CHH shows every form of genetic inheritance.
Inheriting a known genetic variant does not mean a person will develop the condition (penetrance). This makes predicting the outcome of any pregnancy involving a KS parent very difficult.
Other factors will affect how genes work in a person. Two siblings can inherit the same gene variant and have different symptoms or no symptoms at all (epigenetics).
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Part of my Kallmann syndrome story. I enjoy the chance to talk and meet fellow patients and talk about topics that are not easy to talk about with others. It is good to hear from other patients and their experience with the condition and how they have overcome aspects of having the condition.
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Kallmann syndrome is a form of congential hypogonadotropic hypogonadism where the sense of smell is also absent or reduced along with partial or absent puberty.
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Most of my videos will be about my medical condition Kallmann Syndrome.
It is a rare genetic hormonal condition that causes a failure in puberty and results in infertility and has the associated symptom of a lack of sense of smell.
I was diagnosed at 23 and have been on various forms of treatment ever since. I now talk to and meet fellow patients and enjoy the chance of talking to them and helping to spread information about this rare condition.