I was born in Leicester, England on March 1st 1967, the same day my grandfather celebrated his 59th birthday. My German mother was only 18 at the time, my English father was 22. My parents never had another child together and as fate would have it, perhaps because they had married so young, they divorced when I was 6 years old. Mum returned to her native Frankfurt soon afterwards and I stayed behind in Leicester with my father. When Mum met my future stepfather, they bought an apartment together on the outskirts of Frankfurt and started to make arrangements for me to come over and and live with them. I had already met Mum's new partner and I liked him. By July 1974, I was ready to join them. I remember that day as if it were yesterday, the day that changed all of our lives for good. Everyone was in tears; Dad and Grampa because I was no longer going to be living with them and Mum, Opa and Oma (my German grandparents) because they had all fought so hard to bring me to Germany.

1969

I can honestly say that despite the fact that my father lived in England and I lived in Germany, I had a very happy childhood. My father used to work for an airline and he frequently used to get discounted flights to Frankfurt to visit me and I would spend most of Summer holidays with him in England. Within a year, I had learnt to speak German. I got on very well with my stepfather and even today, over 20 years later, we are still the best of friends. In 1975, Mum and my stepfather married. I was now part of a real family again and Germany was now my home.

When I was about 7 or 8, it was discovered that I had bilateral cryptorchidism; i.e. both of my testes had failed to descend into the scrotum prior to birth. I was told that many young boys had this problem and that I would need an operation to correct it. I had the orchidopexy soon afterwards. At the time, neither I nor my mother remember being asked whether or not I had a sense of smell, but with the benefit of hindsight, my cryptorchidism and anosmia were the first indications that I had Kallmann's syndrome.

Another turning point in my life came in 1980, the year of my 13th birthday. My stepfather had been offered a job in Brazil and we were all really excited about going to live there. In March, we left the relative drabness and stability of Frankfurt behind and headed for the very colourful and vibrant city of Rio de Janeiro. I was looking forward to learning a new language, Portuguese, and to going to a new school.

1980

By the age of 14 or 15, I started to feel that something was not quite right with me. I was not particularly short or skinny for my age, but I soon became aware that I was not developing as fast as the other boys. Their voices were breaking, they had facial hair, they grew taller and stronger but my body stayed the same. I wanted to be like them and I wanted to have a girlfriend just like them, but I was embarrassed by my child-like physique and my high-pitched voice. The showers after sports class were the worst times. I used to make excuses why I couldn't have a shower with the others, because I was so self-conscious about my appearance. I had no sign of pubic or armpit hair at all, whereas the others were already looking like young adults.

The teasing must have started when I was about 16. At first they would make fun of my high-pitched voice and ask me when I would start shaving. Although I was very aware of how far I was lagging behind my schoolmates, I kept telling myself that one day, I would be like them and that I was just a "late developer". However, I started to lose confidence in myself and although my schoolwork never suffered, I became an introvert. I wasn't being invited to parties anymore, but I didn't want to go anyway because I would have felt uncomfortable discussing dates, girls and sex. I was very attracted to some girls in our class but during the time I was going out with my first and only teenage girlfriend I had virtually no sex drive.

1984

When I was 18, I was in my final year at school and I was putting all my efforts into getting my International Baccalaureate so that I could return to England and go on to university. It was also the year that the teasing got more and more cruel. Bits of paper were being passed around the class scribbled with malicious drawings and comments. I knew this was the case because I found one of these pieces of paper on the floor one day, having been previously warned by a girl in my class that some people were saying cruel things about me. A month or two later, one boy comes up to me and in front of everybody asked me when I was going to stop taking female hormones. I tried to laugh all of this off, but deep inside I was hurting a great deal and the little self-confidence that I had was shattered. All I felt now was resentment and anger towards them and I grew to despise them. To this day, I look back on those days with great sadness.

In June of 1985, I graduated from the American High School in Rio having received my International Baccalaureate and I returned to England, my mother, stepfather and three little half-sisters staying behind. Throughout my childhood and teens, my main aim was to have a career in aviation and so I applied to the few English universities which had courses in aeronautical engineering. Unfortunately, the International Baccalaureate was not recognised by many English universities at the time and I had to go back to school for another two years to take my 'A'-levels.

I was already two years older than my new classmates and yet I looked younger than any of them. It wasn't long before a small group of students began to make fun of my voice and lack of facial hair. One thing that used to always terrify me was when somebody would ask me how old I was. In these situations I felt I couldn't win, whatever I said. If I gave my true age, they would either not believe me or they would sometimes tell their friends as if I was some kind of freak. If I lied about my age, I was often able to get away with it, but I felt ashamed of the fact that I was deceiving myself as well as the person asking the question. It is true to say that at this time I was getting more and more paranoid about what people were saying about me and also increasingly unhappy. Some of this may well have been imagined on my part, but the anxiety, unhappiness and introversion were very real.

I did go to see my doctor on several occasions to try and find out if there was something wrong with me. The first time I went to see him, I had noticed a lump in my right breast, but he claimed that there was nothing there and that I was imagining it. I then went to see one of his colleagues for a second opinion and he said that many young boys had enlarged breast tissue (gynaecomastia) and it would go away again. The problem was that I was no longer a young boy, but a young man in his late teens. Perhaps I really was imagining it, there wasn't a problem after all and I was just a "late developer". That is how I lived my life for the next few years.

By July 1987, four months after my 20th birthday, I finally had the qualifications I needed (Maths, Physics and Chemistry 'A'-levels) to enter the university and course of my choice. The day I collected my results was one of the happiest and most memorable days of my life. My grades were very good, certainly better than I could ever have expected, so all the hard work over the previous two years had paid off. I was brimming with new-found confidence and nothing was able to stop me now.

1987

My first year at university was happy on the whole, but there were times when I felt that the whispers and incredulous looks were following me around wherever I went. When I went to the pub with my friends who were a year or two younger than me, it was often me who was refused an alcoholic drink by the barman. Going to a nightclub was equally as embarrassing. When on those few occasions I did manage to get in, the prospect of 'chatting up' girls and them asking me how old I was used to terrify me. I would leave the club thinking that all this was never going to go away.

My second year was another major turning point in my life. One day I went to the swimming pool with one of my coursemates and in the changing rooms, he noticed that I had very little pubic hair and small genitalia. A few days later in the university canteen, we had a disagreement about something and in a loud voice, he told everybody on our table how few 'pubes' (pubic hairs) I had and asked when was my voice was going to break and when was I going to start shaving. I was seething with anger and as we were leaving the canteen, I hit him as hard as I could. I am not a violent person, but his outburst humiliated me and I was in tears by the time I got to my room. I couldn't stand it any longer and I realised then that nothing was going to change unless I did something about it. That's when I made an appointment to see the university doctor.

1988

I explained to the doctor that at 21 years old, I looked like a boy in his early teens. I also told him that other doctors I had consulted about the same problem in previous years had not taken me seriously and I did not want to let that happen again. I wasn't going to leave unless he told me what was wrong with me or he sent me to a specialist who could. Fortunately, this doctor did take me seriously, telling me that he suspected something hormonal caused by a condition called 'hypogonadism' and he would refer me to an endocrinologist who would be able to help me. I asked him what this meant if in the future I wanted to have children. He responded by saying that I was probably infertile and that the chances of reversing this were fairly slim, but at least I could easily be treated to make me go through puberty. It was the first time that I knew for sure that I had a medical condition and even better, it actually had a name. I know this may sound a little strange, but what I learnt at the doctor's really was a tremendous relief, even with the shock of learning that I may never be a father.

A few weeks later, I went to see the endocrinologist. One of the first questions he asked me was whether or not I was able to smell. I though this was a bit odd, because what did having no sense of smell have to do with not going through puberty ? That is when I heard the term "Kallmann's syndrome" for the first time. It could be treated by means of testosterone injections and although fertility was unlikely, I would go through puberty just like everybody else. After a number of tests, including CT scans, X-rays of the wrist, an insulin tolerance test and smell tests, it was finally confirmed that I did indeed have Kallmann's syndrome. I was 22 years old.

Sure enough, within the first four weeks of treatment, my voice had broken and I had put on 10 kg in weight. I was delighted with my progress and those around me obviously noticed a huge difference in me. On one occasion, a friend who didn't know that I had Kallmann's syndrome or that I was receiving treatment, jokingly asked me if I was "on the hormones again". If somebody had put this question to me only a few weeks earlier, I would probably have been upset for days afterwards, but not this time. I knew that he was pleased for me and I laughed about it. I felt really good about myself, because I was going to be 'normal' again.

Knowing how hard it had been for me before I knew I had Kallmann's syndrome, I asked my endocrinologist if there was a support group I could approach, so that I could share my experiences with people like myself. I was amazed to learn that no such support group existed and since Kallmann's syndrome was so rare, it was very unlikely that I would find others with the disease.

For several months, everything was going so well but then things started to go very wrong. Several different factors contributed to an increasing sense of isolation. The fact that I had a rare disease, a disease that nobody I spoke to about it had ever heard of, was only just sinking in. There were also omnious signs that all was not well with the family back in Brazil. My mother and stepfather's marriage was breaking down and in my home town of Leicester, my father and stepmother's marriage was collapsing at the same time. Unfortunately, the end result was two divorces. There was absolutely nothing I could do. This was was the final straw and I rapidly became depressed. The quality of my studies was being affected, so much so that when it was time for the exams, I failed them all.

1989

I had two options, the first was to retake the whole year or go away for a year and come back to retake the exams. Having chosen the latter option, I went to Germany and found a job as a bellboy in a first-class Frankfurt hotel. This year away was just what I needed. I had a fantastic time, even saving enough money to go on holiday to America later in the year. In April 1990, it was time to return to England and retake my exams. Refreshed and feeling confident, I passed them all and I was free to go on to my final year. I worked extremely hard in my final year and as a result, I got a good degree in aeronautical engineering, something I had always strived for.

Having travelled to Australia and North America after graduating from university in July 1991, I started work with an aircraft manufacturer a few months later. Professionally, everything was going well and my personal life was certainly improving. I started dating girls and although I still looked younger than my age, I didn't feel as embarrassed about it as I did before. One girl I dated was later to become my wife.

Physically, I was feeling great, but I really needed to meet others with Kallmann's syndrome. My endocrinologist was unable to help, because of patient confidentiality. So where was I to turn ? I did manage to find one support group which catered for children with hormonal diseases, but unfortunately, they were not able to point me in the right direction. I then started to research into Kallmann's syndrome myself just to satisfy my curiosity and find answers to the many questions I had about the disease. The only material I could find were articles in medical journals, some of which were decades old. I then went to the medical section at the British Library and I discovered many more articles on Kallmann's syndrome, especially on forms of fertility treatment. Lorna and I were engaged by this time and we wondered if we would be able to have children one day. I was interested to read about "GnRH pulsatile therapy" and that some patients with Kallmannšs syndrome could be treated successfully for their infertility. One of the names I came across in the medical journals was Professor Howard Jacobs and I decided to contact him to enquire about this form of treatment and ask his opinion about me setting up a patient support group. Within days, I received an enthusiastic letter from him, saying that not only did he treat some of his patients with GnRH pulsatile therapy, but also that one of his colleagues, Dr. Pierre Bouloux, led a team researching specifically into Kallmann's syndrome. This was an amazing breakthrough for me. Dr. Bouloux first contacted me in March 1995 and I explained that I wanted to set up a patient support group and would he be willing to help me. HYPOHH was born and the rest is history (read the HYPOHH story).

In September 1995 at the age of 28, I married Lorna who was 26 at the time. The wedding took almost a year to prepare: venue, catering, transport, sending out invitations, honeymoon, etc. but it was all worthwhile in the end. It was good to see members of our respective families who we hadn't seen for years and it was also the first time I had seen Mum and Dad being not at each other's throats in over 20 years. It really was a day to remember.

1995

Even before we got married, Lorna and I talked about my infertility and how and when I could start having specialised fertility treatment. Although neither of us were ready to start a family at the time, we decided that I should try out "GnRH pulsatile therapy" and see if there was any improvement in my virtually non-existent sperm count and then resume treatment a year or two later if the results were encouraging. Sadly, after 18 months of treatment the results were not at all encouraging and my sperm count was still nil. We both concluded that it was not worth continuing with the treatment and that when we were ready to have children of our own, we would look at alternatives like adoption, artificial insemination by donor (AID) or even advanced forms of fertility treatment like ICSI. In 1997, I had a testicular biopsy which basically showed that the sperm-producing cells in my testes suffered irreparable damage as a result of my cryptorchidism as a young child. Even though I had an orchidopexy to correct this at the age of 7, the testes were unlikely to ever produce sperm cells, at least not until a highly advanced form of fertility treatment became available at some point in the future.

In late 1997, I opted for testosterone implants as an alternative to injections which were not only painful but also had uncomfortable side effects like pronounced mood swings - bursts of high energy levels followed by several days of lethargy and tiredness. I prefer the implants - I have none of the side effects I had previously experienced with the injections and perhaps more importantly, they last 6 months at a time and I could get on with my life without having to worry about injecting myself every two weeks.

At about the same time of me switching to testosterone implants, I was diagnosed as having osteoporosis. Osteoporosis or "brittle bone disease" was something I had always associated with little old ladies and walking sticks, and I never exepected to be affected myself by this often crippling disease - after all, I was only 30 years old. The reason that I and so many othere sufferers of Kallmann's syndrome develop osteoporosis is because sex hormones (testosterone for men, oestrogen for women) needed for healthy bone growth were absent during adolescence. This meant that although the bones still grew, their strength and density failed to reach their peak levels and as a result, my osteoporotic bones were more liable to fracture (i.e. they were more brittle) than normal, healthy bones.

1999

Osteoporosis can be treated and bone density increased with appropriate treatment. I started on a drug alled Didronel PMO and I will need to continue with this treatment for the foreseeable future. I have at least one bone scan a year to check for any improvement in bone density and thankfully, this has now stabilised; i.e. my bones are not getting any weaker and the treatment with Didronel PMO appears to be working.

So, my treatment is going well and life on the whole is good. There have been some problems with Lorna's side of the family who find my infertility a little hard to accept and I have to admit that I find their ignorance very upsetting at times. That said, I am happy with my life. I have also learned to accept that I do suffer from a rare medical condition and that I will need treatment for the rest of my life. Setting up HYPOHH has given me and so many others a lot of strength - I have at last come to terms with Kallmann's syndrome. It has been a long journey to get this far, but I'm there now.