What Do You Do In The Face Of A Rare Disorder? How This Artist Is Facing Down The Threat Of Total Paralysis

By Corina Knoll
Los Angeles Times

WWR Article Summary (tl;dr) What do you do when you are facing a debilitating illness? For one inspiring woman in California the answer is TRAVEL, LOVE and CREATE.

Los Angeles Times

The night is always broken by pain.

She wakes desperate to shake the frozen ache wrapped around her limbs.

Too weak to roll over, turn, shift, she nudges her husband, who wearily pushes her into a new position.

The performance plays out up to a dozen times before sunlight slides through the shutters.

Kam Redlawsk is 38.

She dyes her hair brilliant colors, dotes on her dog Pippi, throws dinner parties and dreams up designs for product and toy companies.

She also has a rare genetic disorder that progressively weakens muscles as it inches throughout her body.
It is not fatal, but it deals in devastation. Although there is no loss of sensation, most patients eventually experience something similar to quadriplegia.

It first revealed itself in high school, when a sleepiness fluttered in her feet. Redlawsk blamed it on too much soccer. She was a midfielder, lithe and swift with a ball.

But then she started to trip on stairs.

Doctors’ theories proved false. Some friends and family members thought it was all in her head.

A few years later, Redlawsk had grown used to scanning her path for rough surfaces. Sidewalk cracks, curbs, small inclines, even grass, became obstacles.

By then she was studying design at the College for Creative Studies in Detroit and taking calculated routes across campus.

The correct diagnosis, when it arrived, was unfathomable: GNE myopathy, also called hereditary inclusion body myopathy, or HIBM. Incredibly rare, it affects about 7,000 people around the globe.

Redlawsk has found there is no lasting way to navigate this steady procession to paralysis.

Related News

Leave a Reply

Your email address will not be published. Required fields are marked *