kallmann syndrome

Survey for male KS / CHH patients on fertility treatments.

A team of endocrinologists at Imperial College in the UK are planning a large study to look at fertility treatments for male KS / CHH patients in order to establish best practice guidelines.

As part of this study they have created this short survey for any KS / CHH to complete to pass on their experiences and opinions on fertility treatments. They want to know the issues and questions male KS / CHH patients have on fertility treatments.

No medical information or personal information is required, they just want to hear patient views and opinions on fertility treatments to help them plan the full study. All male patients can take the survey, regardless if they have had treatment or not, or where they live.

Talking about Kallmann syndrome to others.

I do not mind talking about my condition to anybody who is willing to listen. I would not go far as to say I enjoy talking about the condition but I do appreciate the chance of trying to raise awareness of the condition.

I do like the "first patient" conversations, where I am the first fellow patient somebody has ever talked to. These conversations can last for hours and often will cover the same questions. I am happy to talk about my experiences with the condition, both positive and negative, if it helps a fellow patient learn more about the condition.

It is the psychological / emotional side of having Kallmann syndrome / CHH which creates the more intense conversations. I have not handled the emotional and physical relationship side of having the condition well. I am happy to talk about my experiences, it might help others not make the same mistakes.

Due to the personal / intimate nature of the condition it is not an easy one to discuss with anybody sometimes, even fellow patients. I tend to be as open as possible, even to the point of over sharing perhaps but I do think it can help some patients to be able to talk other patients who understand the condition.

As with any rare disorder it is perhaps only fellow patients who understand what it is like to have the condition. Puberty is such a natural process normally it can be difficult for others to appreciate what it is like not to go through it correctly or fully.

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Kallmann syndrome on line survey request.

Survey request from a KS patient undertaking undergraduate Psychology degree in the UK.

I am conducting research for my dissertation as an undergraduate student at Wrexham Glyndŵr University. The purpose of research is to explore Gender expression for Male individuals with Kallmann Syndrome. Previous research has neglected to specifically explore how gender is expressed for individuals with KS. This participation will take 45 minutes to complete.

We want to collect data from males over the age of 18 who have an official Kallmann Syndrome diagnosis. An individual’s self-reported treatment status (Treated/Intermittent/Untreated). We ask those who have previously experienced dysphoria surrounding gender or personal experiences related to gender which may be distressing to not take part in the research. Ethical approval for this study was granted by the Wrexham Glyndŵr University Psychology Department Research Ethics sub-committee on 14/02/2023

Link Below

You can access the surveys via this link: https://wgu.onlinesurveys.ac.uk/exploring-gender-roles...

If you would like more information, please direct any questions to Stuart Harkin via email at S17002247@mail.glyndwr.ac.uk