When Neil Smith was in the boys showers at school, he knew he was different. While other classmates were clearly going through puberty, filling out and growing hair in their nether regions, he wasn’t.

‘I didn’t get the muscle or hair growth, if you see my graduation photograph, I still look about 15,’ Neil, 55, tells Metro. ‘I knew I wasn’t developing, but I assumed it’d happen at some stage.’

But he wasn’t just a ‘late bloomer’, that stage never came, and he would later discover his ‘absent puberty’ was down to Kallmann Syndrome.

It’s a rare genetic condition, according to GP Suzanne Wylie, which affects the development and function of the reproductive system, as well as your ability to smell anything. You could also, in certain cases, have a micropenis.

If you’ve been keeping up on your news, you might’ve seen that Adolf Hitler also had Kallmann Syndrome, or so renowned scientist, Professor Turi King, claims. With songs and stories from the war about the size of his genitalia, and a 1923 medical exam revealing he had an undescended testicle, there’s a solid 10% chance the Nazi leader had a micropenis.

For reference, this is a penis that measures less than three inches long as an adult, according to Healthline. To be clear, most people with Kallmann Syndrome don’t have this symptom, although they are typically smaller than the UK average of 5.63 inches.

While Neil measures in at four inches, which he claims is the typical size for someone with his condition, he finds the sensationalism around Hitler’s supposed micro ‘very frustrating’.

‘Most people with my condition look completely normal and the micropenis and undescended testicles aren’t a hallmark of our condition, – it’s down to your genetics and how severe your syndrome is’ Neil, a biomedical scientist, explains.

‘We should be looking at whether Hitler had a sense of smell because that’s the main symptom. The coverage has been worrying and sensationalised – I’ve been talking to other people with Kallmann’s syndrome who are worried and annoyed their condition is seen as just [having a micropenis] – it’s not like that for everyone.’

Neil was born without the ability to smell anything, and had 70% hearing loss in one ear. ‘I miss out on good smells and bad smells, which are all attached to memory and attraction – but I don’t care,’ he says.

‘My personal hygiene as a teenager probably wasn’t great because I couldn’t smell myself, although I didn’t go through puberty so I wasn’t sweating more or anything.

‘It’s tricky with food – I get very bad food poisoning at least once a year, because I can’t smell if the milk has gone off. I can’t smell burning if I leave the oven on, either.’

He went through the initial two Tanner stages of puberty until the age of 12 – this is the medical scale that tracks development. However, by his mid-teens his penis, testes and scrotum weren’t enlarging at the rate of his peers. He also had no libido or interest in sex.

‘Eventually I was the only one in my year group not to show any development, and this didn’t go unnoticed,’ Neil, from London, adds.

A routine health inspection by the school nurse, as part of a health screen for a permit to work on a newspaper delivery round, led to a referral to a GP at the age of 15.

‘The doctor just said I was a late bloomer because I hadn’t started puberty, and to wait and see – he didn’t take into account my lack of smell and poor hearing,’ Neil says.

At 17, when he still hadn’t hit puberty, he was put on low-dose testosterone (Sustanon), which didn’t make a difference to his symptoms, apart from giving him a slight growth spurt.

‘It wasn’t frustrating at the time because I just accepted it,’ he recalls. ‘I wasn’t unhappy but, looking back, I missed out on a lot socially.’

At university he had limited social interactions and didn’t attend many events, because of a lack of confidence from his symptoms, and limited interest in getting to know someone romantically.

When he started his job as a biomedical scientist at the Royal Free Hospital in London he tracked down endocrinologist Richard Quinton to see if he could get a diagnosis.

‘At that time I was 23 and knew something was wrong, but no doctor had been paying attention,’ Neil adds. ‘I found Richard in his office and he asked me about my symptoms – then he said “do you have a sense of smell?”

‘No one had ever asked me that question before, and that’s what finally led to my diagnosis of Kallmann Syndrome.’

It’s a form of hypogonadotropic hypogonadism, meaning the body doesn’tproduce enough of the hormones (gonadotrophins) that stimulate the testes or ovaries,’ Dr Suzanne Wylie, medical adviser for IQdoctor, tells Metro.

‘The condition is caused by a problem in the development of certain nerve cells in the brain, specifically those that control the release of hormones from the hypothalamus, and also affects the olfactory nerves, which are responsible for the sense of smell.’

Suzanne adds that without normal levels of testosterone, you then experience absent puberty and infertility, the most common symptoms alongside the loss of smell. While there’s no cure, it can be managed.

As a result of his diagnosis, Neil feels he’s been left behind socially (but he was never bullied), emotionally and physically – having never been in a romantic relationship.

‘I self-isolated and was shy, but I’m an outlier in this respect when it comes to people with my condition,’ he explains. ‘In the 1980s there wasn’t any information available online, so by waiting like my doctor told me, I watched my friends grow up normally and I got left behind.’

‘I’ve never had a true relationship,’ he adds. ‘I’m so used to living on my own – I’ve done so since university – so I can’t see it changing. But that’s down to me, not Kallmann’s. I’ve met the right person [to be in a relationship with] twice, but I’ve never acted on it.’

Since being diagnosed he’s tried a few testosterone replacement methods, which is the standard treatment for the syndrome, including gonadotrophin injections, which Neil says has given him some testicular growth and facial hair.

But most importantly, the scientist believes finding a support network is the key to feeling better about Kallmann Syndrome.

‘You’re not alone with this condition, even though it’s very rare,’ Neil says. ‘Being able to talk to and meet other people going through the same thing is so important because then you can see they’re having fairly normal life.

‘It doesn’t have to affect you as much as you think.’

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