By Ellen Lenox Smith

Lately, I feel like we are all living in the twilight zone. These changes to our daily lives are major and, at times, confusing and overwhelming to cope with. Those of us living with chronic, painful medical conditions are already living a life that is complicated and on the edge. For me, living with Ehlers-Danlos syndrome (EDS), a simple tight hug or slip and fall can actually become deadly. So, each day is already a challenge and I must constantly remain vigilant to remain safe.

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By Emily Lemiska

According to the Centers for Disease Control and Prevention, I could be at higher risk of contracting serious illness from COVID-19.

I live with rare neck and spinal cord defects, known as Klippel-Feil syndrome, which cause serious, debilitating pain. The condition affects my posture, which translates into reduced lung capacity. I also have the immune system of a flea: a cold that my husband recovers from in one week takes me about six weeks.

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In light of concerns surrounding COVID-19, U.S. Pain Foundation is putting a temporary hold on in-person events and programs, including support group meetings, our upcoming Advocacy Summit, and our spring Pediatric Pain Warrior Retreat.

Fortunately, much of our programming is offered remotely and will continue as normal. For example, we will continue to offer our five monthly Pain Connection Live support group calls. These calls are led by trained leaders and follow a traditional support group format–but you can participate from the comfort of home. We also have a free webinar on Tuesday at 1 pm EST, “Getting the most out of PT: Secrets from a physical therapist.

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