Pituitary News, Issue 5 - Autumn 1997.

On 12th July 1997 the first national meeting of HYPOHH (Helping You to be Positive about Hypogonadotrophic Hypogonadism) was held at the Royal Free Hospital, London.

On 12th July 1997 the first national meeting of HYPOHH (Helping You to be Positive about Hypogonadotrophic Hypogonadism) was held at the Royal Free Hospital, London. I was slightly nervous at first, as this was the first meeting of its kind anywhere in the world but, thankfully, it was a great success.

HYPOHH was formed in late 1994 and came under the umbrella of The Pituitary Foundation a few months later. It currently has more than 30 members, both in the UK and overseas, most of whom have Kallmann's syndrome, a form of hypogonadotrophic hypogonadism characterised by an absence of GnRH, a hormone naturally released by the Hypothalamus. Sufferers fail to go through puberty unless they are given sex hormone replacement therapy and in addition have no sense of smell (anosmia). The majority of our members are men but our female membership is now growing steadily.

Three years ago, I would never have believed that I would meet another person with Kallmann's syndrome, let alone give a presentation to a room full of fellow Kallmann's patients. Like many sufferers, I found it difficult for many years to find information about my condition and to share my problems with others, mainly because the disease is so uncommon. After all, only 1 in 10,000 men and 1 in 70,000 women are estimated to be affected by the disease.

The meeting was very well-attended, with members travelling down from as far away as Hull and Merseyside! It was very useful for me to put faces to the names of those people to whom I have spoken to on the telephone over the last three years and a number of people have told me that they found it valuable to meet others who had had similar experiences to themselves. Kallmann's syndrome can be a very isolating condition, particularly for teenagers trying to come to terms with all the normal pressures of adolescence as well as failing to develop the same physical characteristics normally experienced during puberty, so I was particularly pleased to see that several teenagers attended the Open Day.

The meeting and HYPOHH itself would not have been possible without the support and enthusiasm of Dr Pierre Bouloux and Dr Richard Quinton, both of whom were on hand to answer medical queries and address concerns about certain forms of treatment on offer to patients. I would also like to thank Dr Phiroze Neemuchwala, who gave a very interesting talk about the psychological problems that many Kallmann's patients may experience when attempting to come to terms with their condition. Dr Neemuchwala has kindly agreed to write an article for the forthcoming inaugural newsletter of HYPOHH.