Forty-Two Years ↓

For forty-two years, people gave Will’s condition different names.

Every new doctor seemed certain. Every new label sounded convincing. He believed them because he didn’t know what else to do.

Looking back now, anger is not a healthy response. Medicine was still learning. But real people paid the price for those missing answers.

A port-wine stain is not a diagnosis. A birthmark is not a diagnosis. These are visible clues. Beyond that, their diagnostic and treatment value is limited.

— Willi Anton —

Your story does not have to be Willi’s.

The world your child has entered is kinder and more informed than the one he was born into. Hope has begun to catch up with science. Don’t stop asking questions.

Will was finally diagnosed with Klippel-Trenaunay Syndrome at age forty-two by a skilled vascular surgeon who was only weeks from retirement. The imaging he ordered revealed what the visuals and simple labels had missed.

Among the findings: no deep veins. Compression garments were not merely unhelpful. They were contraindicated.

Will often says his single greatest motivation for writing is his mom and dad, and their lifelong uncertainty about whether they had done everything possible.

A close second was a well-meaning dermatologist who arranged for him to be evaluated by a respected vascular surgeon and later took him to a medical convention in San Francisco.

Will jokes about doing the “born-rare catwalk,” standing on conference-room tables while doctor after doctor asked questions. There were plenty of nods and smiles. Remarkably, not one mentioned Klippel-Trenaunay Syndrome, even in passing.

Following the conference, Will’s treating dermatologist prescribed heavy-duty compression stockings for both legs. As you may have noticed in our previous reflection, Will is bilaterally involved.

His journey took a difficult turn nearly twenty years later. He learned the hard way that visual diagnosis can cause plausible harm — Severe and Chronic Peripheral Neuropathy.

Once again, it bears repeating:

Compression garments were not merely unhelpful. They were contraindicated.

At age forty-two, Dr. Dilley, Chief Vascular Surgeon at Scripps Clinic in La Jolla and a physician experienced with Klippel-Trenaunay Syndrome, delivered a message Will never forgot:

“Take those stockings off, and don’t put them on again. Not ever. Not unless and until we complete deep-vein studies.”

The findings changed everything, for Will’s specific set of biologics, these were mandatory. For the vascular malformations cohort, these findings are pre-cautionary.

No deep veins. No compression stockings.

Unfortunately, the new prescription was not an easy one.

Twenty hours each day reclining with his feet elevated above his waist, and often above his heart. Four remaining hours spread throughout the day for life’s necessities. No working. No airline travel. No long car rides without extended periods of elevation afterward.

And his Peripheral Neuropathy could not be “fixed.”

Those who live with severe Peripheral Neuropathy understand.

How does a body feel completely numb while simultaneously burning like a bonfire?

How does a body lose coordination and muscle mass while cramping across multiple muscle groups at the same time?

It isn’t merely Restless Legs Syndrome.

Sometimes it becomes restless-mind syndrome too.

A twenty-four-hour battle against pain. A battle against stumbling over your own feet at the worst possible moments. A battle that eventually leads you to look at a wheelchair and realize it is not the answer either.

So where do you go from here?

Ask why the same visuals can mean three completely different things underneath.