What it’s like to live with Klinefelter syndrome

John Younger, 32, didn’t know they were born with an extra X chromosome (Photo: John Younger).

John Jr. always knew something was wrong.

When I was younger, around seven or eight years old, I knew I wasn’t like normal kids at school, John tells Metro.co.uk. I used to watch the girls and hang out with them. That was kind of my thing. I felt like I wanted to be just like them.

As a child, John, who is now 32, began hating his body and constantly searching for answers on the internet.

At one point, when I was ten years old, I told my mother that I felt like I was in the wrong body, John recalls, that I wasn’t supposed to be in this body. I felt different.

It didn’t take two years for John to finally discover the truth when his leg needed surgery.

When they reported their symptoms, doctors began to suspect that John might have a rare condition called Klinefelter’s Syndrome, also known as XXY Syndrome, which is caused by a person who is otherwise genetically male being born with two or more X chromosomes.

What is Kleinfleeter syndrome?

Klinefelter syndrome (KS) is a common congenital disease that affects approximately 1 in 600 live-born males and is caused by the presence of one or more extra sex chromosomes. Chromosomes are genetic material. Males normally have one X and one Y chromosome (XY) and females have two X chromosomes (XX). Klinefelter’s syndrome is characterized by the presence of an extra chromosome (XXY).

KS is diagnosed by a genetic blood test that reveals abnormalities in the karyotype, which is the number, size and shape of chromosomes.

– Klinefelter’s Syndrome Association

The most common signs and symptoms are as follows:

  • Weak muscles and bones
  • Slow motor development – takes longer than average to sit, crawl and walk.
  • Delay in the call
  • Problems during childbirth, e.g. B. Testicles that have not reached the scrotum.
  • Large size
  • Longer legs, shorter torso and wider hips compared to other guys.
  • Absence, delay or incompleteness of puberty.
  • After puberty, less muscles and less hair on the face and body compared to other teenagers.
  • Small hard testicles
  • Small penis.
  • Enlarged breast tissue (gynecomastia)
  • bones of Britons
  • Low energy level
  • Tendency to be shy and sensitive
  • Difficulty expressing or communicating thoughts and feelings
  • Problems with reading, writing, spelling or math.
  • Low or no sperm count
  • Low libido
  • Reduction of hair on face and body
  • Increase in abdominal fat

Blood tests showed these suspicions were correct – John was unknowingly living with XXY syndrome, meaning he was born sterile, had small, malfunctioning testicles, a low libido and an increased risk of breast cancer.

Even after John finally got an answer to why they felt different, he had to spend years trying to figure out who they really were.

After delaying puberty until his late teens, John now defines puberty and uses its pronouns.

John Jr. as a child

As a child, John always knew something was wrong. (Photo: John Jr.)

The only time people find out they have this disease is when they are trying to have a baby, they say.

I’ve been told that many people tend to think that they just can’t have children – in fact, they don’t think twice about it.

Our specifications are a little different. Some don’t have all the symptoms, some have all the symptoms.

I have small testicles, I am tall, I cannot produce sperm, I have problems with speech, language and dyslexia.

I’ve been working on myself for years. I have a clubfoot and one leg is shorter than the other.

John Jr. is in his kitchen

At the age of 12, they finally found the answers (photo: John Jr.).

John, from Cheshire, is grateful to have found an online community of support that has helped him realise he is not alone.

John had long been ashamed of this condition and had tried to forget it because he was in denial.

I didn’t want to tell people I couldn’t have children. When I was with girls, I was embarrassed. I was embarrassed. I didn’t hit puberty until I was 15.

Some of the women I was with accepted that I couldn’t have children, others told me to see you later. I’ve been single for four years.

It was in this online community that John discovered the fluidity of genres – and immediately joined them.

John Jr.

John wants to share his story to raise awareness about Klinefelter syndrome (Photo: John Jr.).

John said: People with the syndrome are more prone to sexual or binary fluidity.

The reason I identify with a gender vibe is that I don’t feel like a man or a woman. I feel like I’m in between. For years I didn’t know what that word was.

I remember reading and thinking about this: Shit, it’s me. I felt like I was done.

John is now speaking openly about Klinefelter syndrome in the hope of raising awareness about the disease – particularly the effects of multiple treatments.

I’ve tried so many drugs, they say. Testosterone injections, patches. I was a very angry person growing up.

People thought I was just being mean, but I took all those drugs back then.

Testosterone has its own side effects.

Bottle of testosterone gel

He also wants to educate people about the effects of taking different medications (Photo: John Jr.)

Everything that has happened to me, from my childhood to my adolescence, has been traumatic, I have considered everything a syndrome.

It has made my mental health so much worse.

People with Klinefelter syndrome are at increased risk for anxiety and depression, as well as type 2 diabetes, osteoporosis, cardiovascular disease and blood clots, autoimmune diseases such as lupus, hypothyroidism and male breast cancer – all of which Johnny regularly looks for in his breasts.

Fortunately, John has a lot of support from his mother, but they have struggled to get help from medical professionals who rarely specialize in this area.

John that by telling their stories they will challenge misconceptions about XXY syndrome and improve access to appropriate treatment.

I found people in Facebook groups and on Instagram, they say. But it’s not talked about much, which is a shame.

I think there’s a lot of stigma in this state. That’s why you won’t see much.

Read more: Health

I’ve had genetic counselors help me in the past, but nothing has happened since.

I wish other people had read about my condition. This won’t take long.

Many of us adults can act like children. There’s nothing we can do. We’re not fully developed yet.

If someone came up to me and asked me about my condition, I would tell them that a man has an X and a Y, and a woman has two X’s. I would tell them I was a woman. I have an extra X.

I’m superhuman. Extra X. I tell you what.

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