CURE CRPS Foundation was created to raise awareness of Complex Regional Pain Syndrome (CRPS) aka RSD, compile and conduct research to update the diagnostic criteria and staging of the disease, and identify and develop best practices and protocols to ultimately find a cure.
CRPS is a disease of the Sympathetic System and the medical community has changed its name more than 22 times since it was discovered in the 1800’s by a physician working with soldiers in the battlefield. CURE CRPS seeks to raise awareness of the disease both inside and outside of the medical filed and find a cure for even late stage disease patients.
CRPS is known as one of the most painful diseases known to mankind, rated more painful than unexpected childbirth, Bone Cancer or field amputation. Doctors working with CRPS Patients believe that more than half of patients struggling with the disease go undiagnosed or misdiagnosed due to ignorance of the disease state of the sympathetic system.
CURING The Suicide Disease
Complex Regional Pain Syndrome (CRPS) also known as Reflex Sympathetic Dystrophy (RSD) or Causalgia is commonly known as “The Suicide Disease” as many patients end their own lives before reaching stage 4. Because CRPS/RSD is also classified as a “Rare disease” most doctors have received little if any education on the nature of the disease or its symptoms. Patients are often misdiagnosed several times as the disease progresses to incurable.
It is the aim of CURE CRPS to leverage data on patient populations to help better identify the mechanisms which cause CRPS and ultimately find a cure. In the meantime CURE CRPS will work to educate doctors including Emergency Room personnel and legislators on treatment protocols, renovate the diagnostic criteria.
CURE CRPS is creating a new platform to interact with patients and doctors where Patients will keep track of their symptoms in a reporting tool which will be shared with their doctors and with the research community.
Treatment for CRPS is currently multi-modal. CURE CRPS is developing protocols based on best practices in patient communities. Fully integrative health care is necessary to treat the CRPS Patient in the absence of cure. Due to the nature of the disease system, Patients must embark on a whole life renovation to their diet, their lifestyle and also to the way they think in order to prevent spread of the disease to new body parts.
Early diagnosis and developing best practices in surgery will reduce chroic incurable cases of CRPS. CURE CRPS will work to make est treatments available to the medical community. CRPS is known as a rare disease however once diagnostic criteria are improved, CRPS may no longer be categorized as a rare disease. Many cases of CRPS follow medical procedure, particularly spinal surgeries where the sympathetic nervous system is damaged. Research into the mechanisms of pain and repair of the autonomous system will be funded by CRPS. Once doctors have a better understanding of the sympathetic system, the medical community can develop best practices to avoid damaging it.