This Woman Does Not Let GNE Myopathy Control Her

Imagine living every day with fear that paralysis may be coming. The idea always lingering in the background, ominous. That’s the case for Kam Redlawsk. But she does not let that fear control her.

Kam, 38, has been diagnosed with GNE myopathy. It causes slow but constant deterioration of muscles.

Her symptoms began in high school, when she began to lose feeling in her feet. As they progressed, she was forced to use a cane. Then, crutches. Five years ago, she had to turn to a wheelchair.

Kam has become accustomed to strange looks from people who don’t understand why a young woman like her is bound to a chair. She doesn’t have any other visible symptoms. Her story is hidden unless she chooses to share it. And Kam does.

She’s an artist, and she uses her work to share her experiences, emotions, trials and triumphs of living with GNE myopathy.

The illness has no cure, and she decided she could either live in fear or live to the fullest. Kam chose the latter.

Prior to being wheelchair-bound, she took a trip to Korea, where she was born. She was adopted at age 4 and wanted desperately to see her home country. The experience was everything she wanted it to be. And upon her return home, she knew she couldn’t live the rest of her life confined to one area. She traveled to Japan, Thailand, France, Mexico, England and Australia.

Now, less mobile, she goes on road trips, trying to see everything the world has to offer. And while she still has the use of her hands, she’s taking every opportunity to create art.

GNE myopathy turned Kam’s life in a direction she never expected it to go. But it led her to travel, to her husband and to some of her closest friends. Perhaps most importantly, it led her to be appreciative of every single moment, of mobility and of the world.

Read more of Kam’s story here, and see some of her artistic creations!

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