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About Kallmann syndrome / congenital hypogonadotropic hypogonadism

Kallmann syndrome is a rare genetic hormonal condition that results in a failure to start or fully complete puberty. It is also associated with a lack of sense of smell.

Kallmann syndrome is a form of congenital hypogonadotropic hypogonadism which means that is a hypothalamic/ pituitary condition rather than a form of primary hypogonadism.

People with Kallmann syndrome or CHH are almost invariably infertile but treatments are available that can restore fertility in most patients.

Patients with Kallmann syndrome / CHH, both males and females, will normally be have to be on some form of hormone replacement treatment lifelong.

There are sometimes symptoms that are apparent at birth but normally Kallmann syndrome / CHH is diagnosed in the teenage years when puberty fails to start on time.

There are groups on Facebook where you can talk to fellow patients and find out more information.

There is a You Tube channel for videos on Kallmann syndrome / CHH.

There is a patient information website.

National Organisation of Rare Diseases (NORD) information page on Kallmann syndrome.

 

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4 Comments
  1. Live in pheonix Arizona and want treatment from a dr who is knowledgable about ks. Hard to find the right doc

  2. Eimear permalink

    I was diagnosed with KS when I was 19. I am 26 now. I have always been so confused about it. I never got my period until I was put on HRT. After a year on HRT, I asked my endocrinologist if I should go on birth control as I was and still am in a relationship. He said that there is a slight chance of pregnancy so to be safe he put me on Yasmin. No questions asked, no information on the pill or side affects. Hearing all the bad reports of Yasmin has me worried and wondering what other options are out there for me!

    • You will have to confirm with your endocrinologist about this. If you have Kallmann syndrome there is very little chance of you becoming pregnant unless you have specialised treatment.

      The oral contraceptive pill you are on at the moment is mimicking the normal hormone levels that should be seen in women. Women with KS do not produce their hormones or release mature eggs. Most women with KS are born with the correct number of eggs in their ovaries but they lack the correct hormone signals to allow the eggs to mature and be released once a month.

      If you wish to achieve fertility you will have to ask your endocrinologist about specialised gonadotropin therapy which in most cases allow you to achieve pregnancy.

      The pills you are on at the moment are a combination of oestrogen and progesterone. The 7 days a month where you take the “blank” pills is where the period comes, but it is not a true period as you are not releasing any eggs. The oral contraceptive is not the only method of treating women with KS. There are other methods available which might suit you better. Instead of taking contraceptive pills you can take an oestrogen cream / gel and progesterone pills.

      I would also ask your doctor about performing a DEXA bone scan to check your bone density. Women with KS are at risk of developing osteoporosis at any age.

  3. Great site for starters and needs more work to make it awesome. If you need pointers from me, drop me a line.

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