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Survey results for Kallmann syndrome / CHH patients.

September 16, 2018

Over the past couple of months, I have placed online anonymous surveys in the Facebook patient groups. The idea was to gain an idea of the experiences and opinions of fellow Kallmann syndrome / CHH patients and try to see if there were any shared experiences.

Since Kallmann syndrome / CHH covers a broad spectrum of symptoms with different severities there should be some differences, especially when people are diagnosed and treated at different ages.

The results can be found using this link:

Link to survey results on DelayedPuberty.com

Some of the results were as expected.

It is clear that a lot of Kallmann syndrome / CHH patients feel that the psychological issues associated with having the condition are not often recognised or discussed. Early treatment and diagnosis can help but more support is required.

It was perhaps reassuring to see that a good majority of people who responded did not experience negative comments about after having sexual experiences. This perhaps could be reassuring to younger patients.

I find interacting with fellow patients, both in person and online very helpful. Since Kallmann syndrome / CHH is so rare it is important for patients to be able to talk to fellow patients to gain more information and to know what questions to ask their doctors.

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