What its like to live with Klinefelter syndrome – Metro.co.uk

John Junior, 32, had no idea they were born with an extra X chromosome (Picture: John Junior)

John Junior always knew something wasnt right.

When I was younger, about seven or eight, I knew that I wasnt like the normal kids in school, John tells Metro.co.uk. I would look at the girls and hang around with them. They were more my thing. I felt like I wanted to be like them.

As a child, John, now 32, began to hate their body, and endlessly searched online for answers.

I ended up telling my mum at ten that I felt like I was in the wrong body, John remembers, that I shouldnt be in this body. I felt different from everyone else.

It wasnt for two more years that John finally discovered the truth, when an operation was needed on their leg.

As they reported their symptoms, the doctor began to suspect John might have a rare condition called Klinefelter syndrome, also known as XXY syndrome, which results from someone who is otherwise genetically male being born with two or more X chromosomes.

Klinefelters Syndrome (KS) is a common congenital condition which is found in around 1 in 600 live male births and is caused by the presence of one or more additional sex chromosomes. Chromosomes are genetic material. Males typically have one X and one Y chromosome (XY) and females have two X chromosomes (XX). Klinefelters Syndrome is characterised by the presence of an additional chromosome (XXY).

KS is diagnosed by a genetic blood test which identifies any abnormalities in the karyotype i.e. the number, size and shape of the chromosomes.

Klinefelters Syndrome Association

Common signs and symptoms include:

A blood test revealed those suspicions were correct John had been unknowingly living with XXY syndrome, which meant they were born infertile, had small, poorly functioning testicles, a low sex drive, and a higher risk of breast cancer.

Even after finally getting an answer for why they felt different, John had to spend years trying to work out who they were.

After delaying puberty until their later teens, John now identifies as gender-fluid and uses they/them pronouns.

The only time people usually find out that they have the condition is when theyre trying for a baby, they say.

Ive been told many tend to think they just cant have children they dont actually look into it further.

Our characteristics are a little bit different. Some dont have all of the symptoms; some have all of them.

I have small testes, Im tall, I cant produce sperm, Ive got speech and language issues and dyslexia.

For years, Ive been working myself out. Ive got clubfoot and one leg shorter than the other.

John, from Cheshire, is grateful to have found a community of support online, which helped them to understand they are not alone.

John was ashamed of the condition for a long time, and tried to forget about it because they were in denial.

I didnt want to tell people that I couldnt have kids, they say. When I got with girls, I was ashamed. I was embarrassed. I didnt start puberty until I was 15.

Some of the women Ive been with have been okay about me not being able to have kids, others have been like see you later. Ive been single for four years now.

It was within that online community that John discovered gender fluidity and instantly connected.

John says: People with the syndrome are more likely to be gender fluid or non-binary.

The reason I identify as gender-fluid is because I dont feel like a man or a woman. I feel like Im in between. For years, I didnt know what the word was.

I remember reading about it and thinking, f*** me, this is me. I felt like I had closure.

John now talks openly about Klinefelter syndrome in the hopes of raising awareness of the condition especially the impact of multiple treatments.

Ive tried so much medication, they say. Testosterone injections, patches. I was a very angry person as a child.

People thought I was just naughty, but I was on all these drugs at the time.

Testosterone does have its side effects.

Everything thats happened to me from being a child, to a teenager, to now the trauma, Ive put it all down to the syndrome.

Its made my mental health so much worse.

People with Klinefelter syndrome are at a higher risk of anxiety and depression, as well as type 2 diabetes, osteoporosis, cardiovascular disease and blood clots, autoimmune disorders such as lupus, an underactive thyroid gland and male breast cancer something Johnny does regular breast checks for.

Luckily, John has great support from their mum, but they have struggled to get help from health professionals who rarely specialise in the condition.

John that by sharing their story, they will challenge misconceptions of XXY syndrome and improve access to the right treatment.

I found people on Facebook groups and on Instagram, they tell us. But not a lot of people talk about it, which is a shame.

I think theres a lot of stigma around the condition. Thats why you wont see much about it.

Ive had help from genetic counsellors in the past, but nothing since.

I wish other people would read about my condition. It doesnt take long.

A lot of us who are adults can act childish. We cant help it. Were not fully developed.

If someone was to come up and ask me about my condition, Id tell them, a man has an X and a Y, and a woman has two Xs. I have an extra X.

Im a superhuman. An extra X. Thats what I say.

Do you have a story to share?

Get in touch by emailing MetroLifestyleTeam@Metro.co.uk.

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What its like to live with Klinefelter syndrome - Metro.co.uk

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