DYSAUTONOMIA INFORMATION NETWORK
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Mission Statement
The Dysautonomia Information Network (DINET) is a volunteer-based nonprofit organization dedicated to supporting people living with dysautonomia, educating the medical community, and creating awareness for this misunderstood and often misdiagnosed condition. Dizziness, vertigo, and fainting upon standing. Fast, slow, or irregular heart rate – erratic blood pressure and chest pain. Digestive disturbances – from nausea to an inability to adequately move food and waste through the body. A failure to regulate body temperate, with excessive or inadequately low perspiration. These are some of the most common symptoms of dysautonomia that, on their own, can confuse even the most experienced medical practitioners. For those with dysautonomia, the autonomic nervous system is dysfunctional, causing the automatic responses of the body to misfire. From heart rate to breathing to digestion and more, your entire life is impacted by a series of symptoms that often go misdiagnosed. Work, family life, intimate relationships: everything is impacted. DINET is here to help patients with dysautonomia navigate life. With relatable stories on our patient forums, evidence-based literature to share with caregivers, and support from people who have been through it. Our medical advisors, all specialists in the field of dysautonomia, guide us in providing essential information to medical professionals like doctors, nurses, and EMTs so that they can better serve those with this misunderstood condition. We offer lecture series, share and sponsor studies, and create medically informed videos to increase awareness of dysautonomia and its impact. Dysautonomia is an incurable disorder. DINET's mission is to empower those living with this illness to self-manage many of their symptoms and pursue the highest quality of life possible. In addition to providing the medical information needed, DINET also provides practical information about day-to-day life issues, such as nutrition, applying for disability, mental health issues, accessibility requirements, service dogs, traveling, and much more. DINET aims to create a deeper understanding of and greater compassion for patients with the disorder amongst not only caregivers and medical providers, but for the patients themselves, who may not even give themselves the grace and empathy they deserve as they navigate a world not set up for those with hidden disorders.
About This Cause
DINET is a non-profit organization founded, created, and managed by people living with, or caring for someone with dysautonomia. DINET supports both patients with dysautonomia as well as the greater medical community – including doctors, nurses, EMTs, and caregivers. Over 70 million people worldwide are affected by dysautonomia, but it remains poorly understood by much of the medical community. Studies have shown that many long COVID patients are presenting with postural orthostatic tachycardia syndrome (POTS), a form of dysautonomia. Post-COVID POTS is an emerging public health threat that requires attention from the medical community. Elevating awareness and increasing advocacy for this misunderstood condition have always been important, but as the numbers of people diagnosed increase, so does the urgency. DINET is here to help advocate for all those affected by the disorder of dysautonomia, through our combination of patient, medical professional, and community support. We offer medically informed lectures and literature and have a team of medical advisors who help keep us up to date on everything from articles to studies to breakthroughs. We have an anonymous patient forum where people can connect with others living with the same disorder in a safe, moderated environment. And we have social media channels that offer education to anyone who is looking to better understand themselves or those they love who are presenting with dysautonomia, whether it is a primary condition or the secondary as the result of an illness or other disorder, like post-COVID POTS. We reach about 60K unique users every year and expect that reach to expand as we increase awareness for those with post-COVID POTS. Our work is vitally important, whether it is helping to fund studies, sharing study openings so patients can help medical researchers, educating medical professionals like EMTs and doctors on recognizing the symptoms of dysautonomia, and supporting people whose everyday lives are impacted by the combination of crippling symptoms this disorder can present. We, at DINET, are dedicated to providing an online community that will support those living with dysautonomia. A community that is working to spread the word about this illness, promote education within the medical community, and increase awareness and knowledge.