Team GRIT DON'T QUIT is back!
I hope you will consider making a donation or joining my GRIT DON'T QUIT Team for a virtual walk on Saturday, June 15th. I would like to raise awareness and funds to drive research to find better treatments and a cure for CRPS/RSD—a rare, little known disease that packs a huge punch! Raising awareness and doing as much as I can for this cause has become my passion, as this horrible disease has had a profound impact on me and on my family’s life.
In a nutshell, CRPS (Complex Regional Pain Syndrome), formerly known as RSD (Reflex Sympathetic Dystrophy), is a chronic, multi-symptom neurological disease ranked as the most painful condition known to medical science on the McGill Pain Index. It ranks higher than childbirth, cancer, and even amputation. The excruciating pain is 24/7, and unfortunately, there is no cure.
CRPS/RSD is a progressive and perplexing malfunction of the central and peripheral nervous systems. Physicians and researchers do not know what causes CRPS (i.e. what causes the nervous system to attack itself and, basically, go crazy). It most often strikes after a physical trauma, such as a surgery, a broken bone, a vascular event (heart attack or stroke), or a sprain (note: a needle stick even has been reported to trigger CRPS, as has a bad bang of the knee and other seemingly “minor” injuries). In the injury’s aftermath, pain escalates exponentially (!!) instead of improving, and other complex (and scary!) symptoms develop. Moreover, in up to 70% of cases, the condition spreads beyond the original site to additional area(s) in the body (e.g. from foot/hand to entire limb, from limb to limb, across the body diagonally, to internal organs, all four extremities, full body, or any combination of sorts). There are a myriad of systemic complications associated with the disease, as it can affect every bodily system. Indeed, the disease is unpredictable in its course and symptom progression, to say the least. It also affects the limbic system in the brain which controls sleep (insomnia!), emotions, concentration, and memory. Further, as there are no FDA approved treatments specifically for this disease, all treatments (which can be grueling!) are off-label, and all are trial-and-error. In sum, CRPS can be, and often is, severely disabling and life altering.
To learn more, here is a link to an educational slideshow I created about CRPS/RSD: https://docs.google.com/presentation/d/1gn712dKfiu2_6DFc_DY8vAGG5XX9iNF7oJLpTVbjMvA/mobilepresent?slide=id.p
Okay, team…let’s get ready for June 15th! Wherever you are, whenever and however long you choose to walk on Saturday, June 15th, I will be right there with you! Together virtually, I know we can make a difference!
Let’s do this!
Thank you for your support!
Love, Samantha