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.
.
