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Now I understand

I wish I had understood the importance of testosterone therapy twenty years ago. Yes, I know my beloved asked me regularly, “Are you keeping up with your injections. It’s important.” I have no one to blame but myself. Yet, despite everyone telling me it was important, I never really got why. Of course, there’s the …

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Handle with care

In the midst of fertility investigations, you’ve diagnosed your patient as having a common chromosome disorder. You may only be concerned about the fertility implications, but this is a combined diagnosis which must be managed sensitively. Sadly, it rarely is. This is probably the worst possible time for your patient to discover what was wrong …

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Shared experiences

In many studies investigating the experience of living with a chromosome variation, there are often common themes. While healthcare interventions focus nearly exclusively on endocrine issues, those living with condition are often more concerned with its psychosocial impacts. Many, for example, recall struggles in education. Others focus on the challenges they encountered at diagnosis, their …

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Overcoming stigma

If one day I finally felt moved to tell my family about my condition, I don’t think I would tell them what it’s called, or go into any details. That’s because — to my mind — the stigma is still too raw. While an internet search nowadays reveals significantly more helpful academic research than was …

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Deficits

Mrs Green, my second-year Physics teacher, once declared, “There’s no such thing as dyslexia; it’s just an excuse rich parents make for their lazy kids.” I think she spoke for most teachers there, frustrated that the school had allowed entrance to idiots like me, so clearly unsuited to such an esteemed seat of learning. She …

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Thought police

In the eighteen years since diagnosis, I have never knowingly met anyone else with the condition, or interacted with them in any way. This despite studies indicating that it is one of the most common chromosome disorders, affecting as many as one in five-hundred males. In a town like mine, we might expect to encounter …

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Too late

Why do I always have the feeling I’m late to the party?

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