I was diagnosed with Kallmann syndrome when I was 23 years old. Shortly after that I met my first fellow patient.

It was a very interesting and useful experience. For years I had lived with this condition, thinking that I must be the only person not going through puberty and just waiting for things to start happening. Then in a short space of time I had a name for the condition and found that there were other people out there with the condition. Before diagnosis having Kallmann syndrome or CHH can be a very isolating experience especially as it might be very difficult to be able to talk about the symptoms. 

I have found the process of talking to and meeting fellow patients very rewarding and fulfilling. I meet with Kallmann syndrome medical experts from the UK, Europe and US and keep in contact with the latest news and any developments in diagnosis or genetics. I then try to pass this information onto fellow patients.

Occasionally I am involved in patient meetings or social events where patients can come together and talk to medical experts and to meet fellow patients. It can be a useful experience to see the similarities and differences people have in their experiences of delayed or absent puberty.

There are groups on Facebook for Kallmann syndrome patients. The groups have different privacy settings, depending on how much information you are willing to share on social media.

Closed group - Kallmann's syndromers

Public group - Kallmann syndrome links and help

Closed group - Kallmann syndrome

There is also a totally "private" or "secret" group on Facebook that can only be seen by members of that group. It is a useful group to join if you do not want any details about Kallmann syndrome being visible on your Facebook time line. You can normally ask somebody in one of the other groups to let you into the private group or send me a message on Facebook.