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Why CRPS Awareness Month Is So Important

In March 2018 I was diagnosed with Reflex Sympathetic Dystrophy (RSD), now classified as Complex Regional Pain Syndrome (CRPS), which is a form of chronic pain that usually affects an arm or a leg. With just 200,000 people in the U.S. diagnosed with CRPS in the U.S., most people have not heard of CRPS, which is classified as a “rare disease” with no cure. Therefore, the month of November is CRPS Awareness Month.

Since acquiring this disability, I have had the privilege of creating pipeline programming for nearly 100 other disabled individuals. During the 2021 RespectAbility Entertainment Lab for Disabled Entertainment Professionals, we were pleased to have award-winning independent film director and editor Jennifer Valdes as one of 30 Lab Fellows. Like me, Valdes is living with CRPS.

“I used to feel that living life with complex regional pain syndrome wasn’t a life worth living,” she said. “I devalued myself as a human. I felt ashamed of my disability. Disclosing it felt like I was revealing a big secret. I felt isolated and alone. Living with a disability is not the life I planned for, but it’s the only one that I have.”

“Learning acceptance has given me strength and pride in my identity,” Valdes continued. “I’m walking out of the fire – stronger, more resilient, and wearing a suit of armor. I am staring down the gates to tomorrow. I am standing in the sun with a smile on my face.  Flooding bright light into a dark empty room. Seeing myself – new and improved. I’m wonderful, I’m capable and I’m going to be all right.”

In an online RSDSA/Johns Hopkins School of Medicine poll, individuals with CRPS reported that the syndrome frequently interfered with holding a job (62%, disability rate), sleep (96%), mobility (86%), and self-care (57%).

Earlier this month, Valdes was hired as a part-time Origination Technician at AMC Networks in their technology and broadcasting department. She will be monitoring broadcasts and working with live sportscasts via satellite. “I wouldn’t have been able to do this without RespectAbility,” Valdes said. “You have given me the confidence in myself to succeed! Thank you for all your support!”

Most recently, Valdes directed, produced, and edited a blood donation awareness short horror film, in 2019, called The Blood is the Life. The film was nominated as a semi-finalist for the prestigious 2019 Etheria Women in Film Festival, winner of the Best Editing Award at the New Jersey Horror Con, Film Festival Spring 2019 and Best Horror film at Comicpalooza Film Festival 2019, and a semi-finalist of the Women in Horror Film Festival 2020.

To learn more about CRPS, please visit the Reflex Sympathetic Dystrophy Syndrome Association.