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About This Project

Why This Exists

I'm an adult with 47,XXY. Diagnosed late. Like most of us.

For years, my medical care consisted of testosterone checks and not much else. When I asked questions, I got shrugs. When I reported symptoms that didn't fit the hormone narrative, I got dismissed.

Then I started reading the research.

I found out I have 6x the risk of blood clots. No one mentioned it.

I found out I have significantly elevated autoimmune risk – the same diseases that predominantly affect women. No one screened for it.

I found out testosterone doesn't fix anxiety, depression, or body composition in XXY men. No one told me to expect that.

I found out that muscle strength predicts my bone density better than testosterone levels. No one suggested resistance training as bone protection.

All of this was in the medical literature. Published. Peer-reviewed. Sitting there.

It just never reached my doctors. And it never reached me – until I went looking.

What I Built

This site translates research into action.

Every page follows the same structure:

What the research shows – cited, quality-rated
What standard care misses – the gap between evidence and practice
What you can do – tests to request, things to track, scripts for your doctor
What's still unknown – honest about the gaps

I'm not a doctor. I'm not giving medical advice. I'm giving you the information that exists so you can have better conversations with the doctors you do have.

The Approach

Evidence-first. Every claim traces back to published research. Sample sizes and study quality are noted. If the evidence is weak, I say so.

Gaps acknowledged. There's a lot we don't know. I'm not going to pretend otherwise. Where research is missing or conflicting, I flag it.

Action-oriented. Information without action is just frustration. Every topic includes what you can actually do – what to request, what to track, what to watch for.

No identity politics. XXY has become tangled in gender discourse. This site doesn't engage with that. We're here for blood tests and bone density, not ideology. If you're looking for culture war content, you won't find it here.

What This Site Is

A medical information resource for adults with 47,XXY
A translation layer between research and real life
A toolkit for self-advocacy
Fully cited, freely available

What This Site Is Not

Medical advice – I'm not your doctor
A substitute for care – you need providers
Comprehensive – I'm one person, not a medical school
A product – nothing for sale, no newsletter, no program
A gender politics platform – we don't engage

The XXY Experience

If you have XXY, you probably know this feeling:

You learn something important about your condition – not from your doctor, but from a forum post, a support group, a random research paper you stumbled on.

You bring it to your provider. They're skeptical. You push. They order the test. It comes back abnormal.

Now they're interested.

You shouldn't have to do this. But you do. Because the system isn't set up to proactively manage conditions it doesn't fully understand.

This site is what I wish existed when I was diagnosed. It's the briefing packet your endocrinologist should have given you but didn't.

Get In Touch

Medical professionals – If you're a clinician, researcher, or allied health professional working with XXY patients or interested in this area, I'd genuinely like to hear from you. Whether you have insights to share, research I should know about, or questions about what you're seeing here, the door is open.

Adults with XXY – If something here resonates, or doesn't, or you've got experience that might help others, reach out. This site exists because the community taught me more than the medical system did.

Anyone with feedback – Spotted an error? Found a study I missed? Think I've got something wrong? I want to know. The goal is accuracy, not ego.

📧 contact@iamxxy.com

Disclaimer

This website provides general health information about 47,XXY (Klinefelter Syndrome) based on published medical research. It is not medical advice and does not replace consultation with qualified healthcare providers.

The information here is for educational purposes. Individual medical decisions should be made in consultation with your healthcare team, who know your specific situation.

While I strive for accuracy and cite sources, medical knowledge evolves. Always verify critical health decisions with current medical guidance.

I am not a medical professional. I am a patient who reads research.