Our Mission:
Find a cure.
We are patients, physicians and scientists working together to find a cure for humanity's most painful disease.
Complex Regional Pain Syndrome (CRPS) is a major cause of disability in America according to AETNA healthcare and yet most physicians have never heard of the disease. Approximately ten million Americans are living with CRPS according to calculations based on NIH experimental studies, which show 12-14% of all surgeries result in CRPS.
CRPS is a progressively painful and disabling condition which often results in suicide due to lack of palliative care or FDA care protocols. We want to change this troubling trend and provide concrete hope to patients.
Patients are currently paying for medicines vast ignorance of pain-producing disease. CRPS can be managed if diagnosed in the earliest stages however many sources of power are decentivized to diagnose CRPS. Surgeons who may damage autonomic nerves fear legal liability of having causing CRPS and insurance companies including Medicare, Medicaid and the VA want to mitigate the expensive lifelong palliative treatments, which come along with a CRPS diagnosis.
No cure exists for CRPS. There are no FDA-approved treatments for CRPS. There is a lack of double blind placebo-controlled scientific study of CRPS treatments. The diagnostic criteria is lacking in scientific merit.
Most people living with CRPS are misdiagnosed with infection, pseudo gout, somatoform illness, depression, conversion disorder or malingering.
CRPS patients face the hard reality of systemic ignorance of pain disease within medicine and institutionalized discrimination against people complaining of pain common in care facilities. In America there is an alarming lack of training on the pathophysiology of pain and the autonomic system. Medical school students and medical professionals alike have little to no training in the human pain system or what happens to the body when the pain system becomes damaged or diseased. We aim to change this by creating and financing core curricula authored by experts in the pathophysiology of CRPS.
Our mission to find a cure for CRPS requires raising awareness of the disease both within the medical industries and with the general public. People living with CRPS cannot get cured without first being diagnosed. Having the diagnosis will not help if the Federal Government health agencies and consumer protection agencies have approved no care protocols. We aim to change this by bringing clinical data to lawmakers and policymakers.
Our organization will leverage advancements and knowledge across many disciplines. Scientific advancement often moves in unique silos where effort must be made to cross-pollinate ideas. CRPS is known by 72 distinct names according to the discipline, language and region in which it is studied.
To find a cure we need to understand what initiates and drives CRPS, how to better diagnose it, and what common traits or factors must be present to nurture the disease and leverage the clinical data of care providers. Physicians who have practiced medicine for many years tracking patient progress and response to various treatments need to be analyzed and shared.
We have a big job to do because as surgery becomes more and more prevalent so to does CRPS. We have a great deal of work to do educating physicians, scientists, educators, hospitals, insurance industry executives and the general public to CRPS so that CRPS becomes a manageable condition with a cure.
