Zebras On Parade launched this site to increase awareness and promote research for the myriad of medical and psychological conditions that we are caused or affected by underlying Connective Tissue Disorders. Many of these conditions are not only unrecognized or misunderstood by society, but also by many medical providers who are entrusted to care for patients diagnosed with them. Scientists are beginning to realize how many medical conditions are genetically related, now that we have the technology to explore human DNA. Unfortunately, there are limited research programs to correlate new information with what we already know.
While many CTDs and related conditions are considered RARE, most patients in the chronic illness community believe they are only RAREly diagnosed. Conditions like Rheumatoid Arthritis and Muscular Dystrophy are starting to get more media recognition, but other conditions that are less understood like Ehlers-Danlos Syndrome, Lupus, Multiple Sclerosis, Chiari, Lyme, CRPS, Syringomyelia, and so many more are not getting the research they need for doctors to be able to diagnose them easily and definitively. We also believe that there are epigenetic links, some yet undiscovered, that will guide us towards a cure for ALL medical conditions. We hope to encourage professionals to use available medical technology to improve the diagnostic process and contribute to research efforts, especially when patients present with RARE and/or complex disorders. We’ve joined the global network of Zebras and advocates fighting for change during a technological healthcare revolution, to empower them to make informed choices with their care providers, so that one day the term “Undiagnosed” becomes rare.
There are more than 200 known Connective Tissue Disorders, but it is still a challenge to get an accurate diagnosis for most of them due to long lists of overlapping symptoms that vary over time and do not appear to be related. Multi-system involvement frequently leads to confusion for patients and doctors alike, with patients often being referred to Psychiatrists instead of Geneticists, Rheumatologists, or Neurologists, when an obvious cause is not discovered right away. Patients find their symptoms unpredictable and difficult to describe to providers. This results in patients who suffer decades, wasting billions of dollars annually on countless diagnostic tests, multiple doctors, ER visits, extended hospital stays, medications meant for other conditions, and procedures that are unnecessary, disabling, and deadly for many patients. Families are being destroyed by medical kidnapping when children are seized by Social Services, because parents struggle to access proper care for their children, and seek help at multiple hospitals. Medicaid and other public assistance programs are wasting taxpayer funds and valuable resources that are desperately needed in the RARE and Chronic Illness communities, on improper medical care and pharmaceutical prescriptions.
Zebras need to know that we are on the brink of a healthcare revolution in patient-centered precision medicine spurred by technological advances and collaborative research efforts. Patients still need open access and dissemination of known disease information, networking of medical experts, medical provider education & support, availability of treatment options, equal access to qualified medical care, health insurance coverage, patient-centered team care models, collaborative research programs, Disability recognition, public school physical education adaptation support, and most importantly: access to biopsies, urinalysis, blood, and DNA testing, for early diagnosis and intervention in suspected RARE and complex conditions. The use of available medical technology should include MRIs, CTs, PET scans if warranted, whether or not physicians and insurance companies feel it is cost effective. Specialist and alternative provider referrals should be initiated within reasonable time frames for patients to survive. Early diagnosis gives patients a better chance of maintaining their quality of life, and making informed decisions about their health care. It also reduces the overall cost of patient care, and could save government assistance programs billions of dollars every year.
Without awareness of these issues that create a barrier to care for RARE and UNDIAGNOSED patients, new research is not being funded or supported. We can instigate change by drawing attention to the facts, the faces, and the failures of the healthcare system to recognize this growing epidemic. To see how you can be a part of the healthcare revolution, take ACTION! or CONTACT us. You can also join us in #TestDontGuess and #RightToKnow campaigns on Twitter and Facebook! We are ALWAYS seeking volunteers at ZEBRAS ON PARADE! Together, we are stronger and our hoofbeats are louder. Now let’s dazzle…
Stay tuned for future podcasts and other awareness projects!
Please see the DISCLAIMERS page if you are still unsure of the purpose of this website. ZebrasOnParade.com is not here to provide medical advice, a diagnosis, or treatment plans for patients or care takers. We are here to recognize the RAREly diagnosed and connect patients, caretakers, providers, researchers, advocates, and media to the worldwide network of Zebra Communities hoping for a cure.