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Raising disease awareness on Color the World Orange Day

MOUNT UPTON, N.Y. (WBNG) — 32-year-old Mount Upton resident Kirah DeCarlo suffers from Complex Regional Pain Syndrome, or CRPS and wants to raise awareness about the disease.

“Some days I’ll spend all day in bed, either because I’m cold or the pain is just excruciating,” said DeCarlo.

12 News interviewed DeCarlo two-years-ago and checked back in with her on Sunday.

“The last time we talked, I thought I was in pretty bad shape then, but comparatively speaking I’m in a lot worse shape now.”

Her CRPS has now spread to both of her legs, causing muscle spasms.

“It’s super painful when it does that and the first time it happened I completely lost function of my leg and it scared the bejeebers out of me.”

DeCarlo is unable to work due to her condition and lives with her mom Lillian DeCarlo.

“I get scared because I don’t know what’s really going to happen to her,” said Lillian DeCarlo.

She struggles through simple chores like washing dishes and takes constant medication.

Monday is ‘Color the World Orange Day’ for CRPS, which is celebrated every November and she encourages others to join in.

“It’s important that we get awareness because there’s not a lot of research gone into it so color the world orange is a great way to unite us under one color and our color is orange.”

Known for sporting a constant smile, DeCarlo is not letting her illness keep her down.

“You have to smile, you have to keep going, you have to find the strength within yourself even on your darkest hour, there’s always a reason to keep going.”

There are several CRPS support groups on Facebook that DeCarlo pointed out.

Just search ‘Southern Tier CRPS of NY (Chronic Pain, Too!)’ or ‘Young People Living with Fibromyalgia/Chronic Pain.’

Julia Gorman

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