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FOOTPRINTS
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On my way to the doctor, the lymph node in my groin was the size of a pea.
By the time they saw me, it was the size of a handball.
He wouldn’t hear my history. My wife and I gave it anyway — Klippel-Trenaunay, absent deep veins, chronic venous insufficiency, cellulitis, sepsis, venous stasis ulcers, likely active MRSA.
He lanced it. Called it a cyst. Closed the cut, sent me home. No antibiotics.
It was a lymph node. Likely the last one standing between an infected venous ulcer and my heart. A hundred miles down the road, the next ER doctor listened. That one probably saved my life.
I don’t tell you this to scare you. I tell you this because it’s the most honest answer to a question this whole series has been circling: why does any of this — the Compendium, the Catalog, the Hamburg Manual — actually matter.
It matters because that doctor wasn’t a bad doctor. He was an unfamiliar one. And unfamiliar is the default, not the exception, with something this rare.
KTS shows up in roughly 1 in 100,000 births. Picture 1,000 rooms, a hundred people in each — you’d have to walk through every one of them to expect to find one of us. Now multiply that by 103 different classifications this website tracks, each its own kind of rare. Most clinicians will simply never see enough of any single one to build real familiarity. That’s not a knock on them. That’s just the math of rare.
Which is why we all have our own version of that day. The doctor who comes back into the room asking how to spell the diagnosis. The one who turns to a computer and types “Klippel-Trenaunay” into a search bar, right in front of us. Google isn’t the problem — it’s fine, for most things. The problem is a search bar becoming the plan, in an emergency room, for someone born rare.
This is the last note in the series, and maybe the most useful one for exactly that reason.
Everything we’ve built — the Hamburg Manual, the Classification Catalog, our Compendium — gives you and a doctor a shared language. The Medical Directory is the last piece: where to actually find someone who already knows this territory, so “I’ve seen this before” has a chance of being true.
It won’t ever be complete. The field keeps growing, and so will this. But it’s a start — built by someone who spent thirty years finding these answers the hard way, so you don’t have to spend thirty of your own.
Twelve notes. The why, the science, the syndromes, the specialists, the questions — and now, the tools.
You found us. Welcome!
Live courageously. Love life.