I sustained nerve injuries in my neck after a car accident in 2006. The nerve injuries developed into Complex Regional Pain (CRPS) and I have been living with this Rare Disease since. For me, CRPS affected and then spread down the right side of my body.
What is CRPS?
CRPS is a neurological disease most strongly characterized by intense, debilitating, burning pain. There is no cure for this disease, even though it was first identified as "causalgia" during the American Civil War. In spite of the many decades since then, we know very little more about this disease, how to best treat it, and even how to diagnose it.
CRPS is ranked as the most painful disease on the McGill Pain Index, with a score of 42 out of 50, using the McGill Pain Questionnaire.
What is the impact?
The pain from CRPS keeps me from sitting upright for more than an hour. I have not been able to work since 2013. My graduate degree is in Writing for Children and Young Adults and the act of writing, by hand or typing, is extraordinarily difficult.
I spend my days reclining on a couch. Holding books to read is too painful; instead I have to use e-readers and prop my phone on a pillow. I write when I can, but the pain caused by using my right hand and by sitting prevents me from working very much or for very long.
Why participate in the CRPS Awareness Walk?
One of the biggest problems facing the CRPS community is the lack of awareness about this disease. Even within the medical community, many physicians are not aware this disease even exists, which affects their ability to diagnose and then treat CRPS patients.
Funding is always critical and helps advance research, educate medical professionals, and support the CRPS community,
But for me, raising awareness of this disease, and of the difficulties it creates in the lives of those who experience it or are touched by someone with it, is what is most important. And so each year, when the spring comes, I begin preparing myself to participate in the RSDSA's annual CRPS Awareness Walk.
Will you join me in walking this year's CRPS Awareness Walk?
Location: Haverford College Nature Trail
Parking: South Lot
Date & Time: June 7, 2025 at 9 am