CRPS Hope & Awareness Foundation
Many CRPS sufferers feel like an incredible darkness has surrounded them. We want to provide hope, a lantern in the darkness to let them know that they are not alone.
CRPS Hope & Awareness Foundation was started by Kate P. and Jen M. to help increase awareness about the extremely painful disease known as Complex Regional Pain Syndrome (formerly known as Reflex Sympathetic Dystrophy).
CRPS is a devastating disease that has the potential to completely destroy one's quality of life, sense of wellbeing, and hope for the future. It is considered the most painful disease known within the medical community and yet, few people, including medical professionals, have ever heard of it.
Early diagnosis is key to better outcomes and unfortunately, due to a lack of awareness and knowledge about CRPS, most sufferers see multiple doctors and wait months to years before a diagnosis is made. Too often the diagnosis comes too late and any hope for remission is lost.
Not surprisingly, CRPS research and treatment development are lagging far behind more recognized and funded diseases. In turn, there is still little understanding about the root cause of the disease or how it progresses and spreads. Treatments remain experimental at best and are difficult to access.
We (Kate and Jen) have both experienced the devastating effects of this disease and have lost so much. We decided that we needed to take a stand and attempt to make a difference so that future sufferers are not burdened by the same battles that we have had to endure. (See our individual bios below.)
My name is Kate and I am one of the co-founders of the CRPS Hope & Awareness Foundation. I was first diagnosed with CRPS when I was only 20 years old after foot surgery. Luckily, I was diagnosed early and received prompt treatment and within a few months, I was back to normal. Unfortunately, I was not informed that the resolution of my symptoms was only considered remission and that there is no cure for CRPS. Five years later, I fell and broke my right wrist snowboarding and CRPS returned. I had acute symptoms for almost 2 years and fought hard to regain the use of my right arm. Eventually, things improved and I had minimal pain with the exception of minor flare ups that were ongoing. At that point, I had to give up many of the activities that I loved as I was fearful of hurting myself again and having CRPS return. I managed to complete my graduate degree and started working in a career that I loved. I married my wonderful husband and we expanded our family with 3 beautiful and amazing children. Unfortunately, when my youngest was only 6 months old, CRPS returned with a vengeance. It started in my right arm and within a few months, despite multiple treatments, it spread to my left arm and then within the year, it spread to both my legs. CRPS has had a devastating impact on my life and now that my condition is chronic, it is unlikely that I will ever experience a pain free life, or even a pain free day. At the depth of my despair, I knew that I needed to make a choice to either allow the disease to destroy me or fight back and take a stand. I chose the latter but I knew that I could not do it by myself. Jen and I met through our local hospital pain program and within a short amount of time, I knew that she would make a great partner in this fight. And so the CRPS Hope & Awareness Foundation was born.
Jen's Bio (right)
My name is Jennifer and I am one of the co-founders of the CRPS Hope & Awareness Foundation. My journey with CRPS began when I was thirty four years old. I ended up having surgery on my right shoulder due to a shoulder dislocation injury. I was left with severe pain in my right shoulder that was not in proportion to the pain expected as part of my recovery. I was referred to many specialists to determine the cause of my pain, but each time I walked away feeling like the doctors thought I was crazy. In the meantime the pain started to spread down my right arm and into my hand and before long, my joint mobility syndrome was causing problems in my other joints such as my left shoulder, hips, and knees. As each problem with my joints arose, the constant burning pain that I experience 24 hours a day, seven days a week seemed to spread to the same areas. As the joint would heal, the pain would persist. It took over five years before I was diagnosed with CRPS and I finally learned that this was in fact a very real disease. Having CRPS has drastically altered my life and that of my amazing husband and two incredible children. It has robbed me of my career, created feelings of guilt when I realized that I am not the mother or wife I dreamt of being, and has taken away my ability to be spontanious or socialize the way I used to. This lead to severe depression, anxiety, and grief. I came to realize that I was no longer the person that I used to be and I had to adjust to being the new person I now am. I knew that if I did not fight back against this disease, the depression would take over and destroy what little joy I had left. I wanted to do something to raise more awareness about CRPS, and once I met Kate I knew that I could be part of something that would make a difference for people like us. That is how the CRPS Hope & Awareness Foundation came to be.