Stories About

Rare Diseases

The Goddess With The Blood Red Eyes

If a rare disease steals your eyesight, you might as well drink good wine.

Chronically Ill? Let Your Voice Be Heard

It's easy to feel powerless after diagnosis, but don't keep quiet about your experience. Ask yourself: what am I doing to create a better tomorrow?

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Sepsis, Rocky Mountain Spotted Fever, And Me

Jennifer Hohman thought she was bitten by a flea. It was a tick. Next thing she knew, she was fighting for her life.

How I Diagnosed Myself Reading ‘Alice In Wonderland’

After years of being ignored by doctors, reading Lewis Carroll led to me finally putting a name to what was 'wrong' with me.
A yellow sign reading 20MPH on a clear sunny day.

How Chronic Illness Slowed Me Down For The Better

Maybe being happy is more important than how productive you are.
A beautiful woman in a red dress covers the eyes of a bus driver.

In Defense Of Oversharing

When you live with a chronic condition, getting comfortable with vulnerability may be your greatest strength.

Rocking The Boat

Even though my Mal de Debarquement Syndrome makes me seasick even on dry land, I took a multiday boat ride with my husband, and lived to tell the tale.

The Computer Scientist Trapped Inside His Own Body

Martin Pistorius was 14 when he became locked inside his own body, powerless to move or speak. But computers helped free him.

A Brain Infection Destroyed My Marriage, But Made Me A Writer

For two years, I lost much of my ability to communicate. I clawed it back, but not before realizing my husband and I didn't have much to say to each other.

How Visions of Vietnam Helped Me Survive Paralysis

Changing my attitude and dreaming of another land helped me win a fight I almost lost against Guillain-Barré Syndrome.

How My Own Experience With Illness Helped Me Help My Grandma Die

My own battle with Guillain-Barré, a rare autoimmune disorder, gave me the experience and authority to be there for my grandmother at the end of her life.