NEW DIAGNOSTIC & TREATMENT PROTOCOLS
CRPS is currently seen as treatable only in the earliest stages. Unfortunately most patients are not diagnosed until the later stages where prognosis is poor because the diagnostic tools and protocols are ineffective. New Treatment protocols and comprehensive diagnostic procedures and protocols are needed to help the patient without harming them in the process.
THE RARE DISEASE PROTOCOL ~ PATIENT DOCTOR PARTNERSHIP
Due to CRPS being a rare disease, often the patient is driving their own health-care. It is therefore most important that doctors leverage the patient perspective with rare diseases such as CRPS.
For Doctors to develop treatment strategies, the Doctors must first accurately stage the disease. To do so, they must rely on accurate data which is hard to obtain under the current standards of neurologic diagnostic medicine. Right now, Doctors are sending their CRPS Patients to neurologists who employ antiquated diagnostic tools and protocols which cannot measure the disease state of the CRPS patient. The 10 Minute Neurologic exam is woefully inadequate in describing the state of the sympathetic system. Employing nerve conduction EMG testing is standard and yet dangerous to CRPS patients. A new paradigm for diagnosis and staging is thus required to protect the CRPS patient from flair and progression of the disease.
Imaging studies such as MRI CT Scan and blood tests are used to rule out other causes of widespread migrating pain, edema and motor loss.
LOW-RISK DATA GATHERING INITIATIVE
Because CRPS Patients can experience a full body flair from a simple pin-prick, any diagnostic tool or treatment which leverages needles must be carefully considered in terms of risk vs. benefit. The tiny sympathetic system nerves cannot be seen from outside the body and disruption of this system can instigate an immediate catastrophic cascading full-body response.
New Diagnostic tools must be developed in order to protect the patient from flairs during treatment.
Early treatment protocols were found to be causal to progression of the disease. Doctors in the early 1900's were urging causalgia patients to ice the affected limb which actually caused widespread tissue necrosis and CRPS spread due to vasoconstriction.
For this reason, CURE CRPS aims to provide the patient with a new platform to gather scientific data on themselves to help doctors develop custom treatment protocols. CURE CRPS is building a platform for data gathering which will inform doctors of what instigates flairs, what treatment protocols help during diverse stages and how to identify when various systems are impacted by sympathetic System responses.
SYMPATHETIC SYSTEM IN DISEASE
CRPS is a disease of the Sympathetic System, which is the body's autonomic system in charge of regulating heart rate, body temperature, Digestion, sweating, vasoconstriction and vasodialation. The Sympathetic System is your body's fight or flight mechanism and in a state of disease can be catastrophic to the body. When this archetypal survival system is not functioning properly, the body is functioning in a chronic stressful state where the inflammation and stress response is engaged to the detriment of the whole body. When engaged, the Sympathetic System can increase the heart rate and dialate blood vessels, pouring blood into micro capillaries. According to the man who discovered this disease, the site of the
CURE CRPS Foundation funds retrospective studies from doctors working with CRPS patients around the world, and directly from patients who have been essentially managing their own care.
CURE CRPS Medical Advisory Board authors retrospective and meta-data studies for peer review and publication.