A slight diversion from my usual posts but one that’s near and dear to my heart. November is CRPS awareness month. This disease is one I had never heard of before January but has turned our whole world upside down this past year. CRPS or Complex Regional Pain Syndrome usually (but not always) starts with an injury but causes pain to persist above and beyond the actual healing of that injury. This is not a little achy pain that comes and goes this is constant intense pain that is up with childbirth and amputation on the pain scale. The pain of this has been described as a cold burn, imagine putting your foot in ice water for a full minute so it’s freezing yet burning. This is how a CRPS limb will feel 24/7. There is not a known cause or cure, however many advances are being made. Awareness of this disease is vital to that progress!
Our daughter Scarlet was diagnosed with this in January of 2015 and has been through quite a journey. Read her full story here SCARLET’S CRPS JOURNEY
Scarlet’s story has a happy ending thankfully but many others don’t. This disease needs to be caught early and treated aggressively or it can last a lifetime. Too often it gets misdiagnosed or the patient’s experience of pain is discredited since physically they are all right. Much more awareness needs to be made as this is more common than we realize. Join me in wearing orange this November and help spread the word about CRPS!
Here is an image of Niagara Falls turning orange in honor or CRPS awareness month on November 7th:
And an article about a girl named Cameron with a very similar experience to Scarlet’s who was also treated at Stanford. We had the pleasure of meeting her while we were there and she’s doing perfectly well today!