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Update. Jan 2019.

January 13, 2019

I am planning to take part in a clinical trial in London, UK. They are looking into the effect the hormone Kisspeptin has on patients with Kallmann syndrome / CHH. They are keen to hear from any patient in the UK who would like to take part and they will pay for your study visit and travel and accommodation to London. More details:

Kisspeptin clinical trial.

I am currently not on testosterone treatment. Instead, I take hCG (human chorionic gonadotropin). This is a hormone normally only produced by females but has the same activity as luteinising hormone, one of the two pituitary hormones missing due to Kallmann syndrome / CHH. The hCG allows for the natural production of testosterone, rather than having to inject it. With no treatment my testosterone level is barely above 0.5 nmol/l but while on hCG I can get an almost normal testosterone level.

I used to take a drug called Pregnyl but unfortunately, this has ceased production. I am forced to take a version of hCG called Ovitrelle which is designed for female use but can be used in males in lower doses. It does have the advantage in coming in a pre-filled syringe pen form which makes injecting easier.

IMG_0456

Ovitrelle pen. hCG. human chorionic gonadotropin

This week I finally had the chance to meet up with a UK friend who I have talked to online for over 7 years but had never had the chance to meet in person. I always enjoy the chance of meeting up with KS friends in person. It is such a rare condition often patients do not get a chance to meet up and talk with another person who understands what it is like to have the condition. I think it can be a very useful experience to talk with fellow patients when you can ask questions or talk about things that would be very difficult to do with other friends or family. We have groups on Facebook and Rare Connect where you can contact fellow patients.

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