Dysautonomia Disorders
Maine Resources
Dysautonomia International - This Facebook group provides a supportive community for those affected by dysautonomia and myalgic encephalomyelitis (ME). It offers a space for members to share experiences, find emotional support, and access information related to managing these conditions. This group aims to foster connection and mutual assistance among individuals facing similar health challenges.
Neurological Physical Therapy - Maine Strong Balance Center focuses on improving the quality of life for individuals with neurological conditions. The center offers a unique longitudinal model of care for chronic conditions and ensures patients feel comfortable and well-informed throughout their treatment. Maine Strong Balance Center indicates they work with patients who have autonomic dysfunction such as Postural Orthostatic Tachycardia Syndrome and autonomic neuropathy. They have locations in South Portland, Scarborough, and Saco.
Regional Resources
Autonomic Neurology Services | Brigham and Women's Hospital - Located in Boston, MA, various disorders including orthostatic hypotension, autonomic neuropathy, postural tachycardia syndrome, and multiple system atrophy. They conduct comprehensive evaluations such as tilt tests and skin biopsies, and offer personalized treatments like dietary changes, medications, and Botox for sweating.
POTS of the Seacoast - POTS of the Seacoast is a support group for individuals with Postural Orthostatic Tachycardia Syndrome (POTS), based in Dover, NH. Founded by Dr. Khosro Farhad in 2015, the group meets monthly to offer support and share resources, sometimes featuring guest speakers. They aim to raise awareness about POTS and other forms of dysautonomia through community engagement. In-person meetings are currently on hold, with occasional Zoom sessions.
National Resources
Dysautonomia Information Network (DINET) - A comprehensive resource for individuals affected by dysautonomia, a group of disorders affecting the autonomic nervous system. The site offers detailed information on various forms of dysautonomia, including Postural Orthostatic Tachycardia Syndrome (POTS), Neurocardiogenic Syncope (NCS), and Multiple System Atrophy (MSA). It provides educational materials, patient guides and research updates. Additionally, there is a discussion forum where people share personal stories and information that could help patients and caregivers alike.
Dysautonomia International - A non-profit organization dedicated to improving the lives of individuals with autonomic nervous system disorders. Their mission focuses on advancing research, educating physicians, raising public awareness, and empowering patients. Dysautonomia International supports various initiatives, including funding research, providing educational materials, and advocating for patient rights and awareness.
Dysautonomia Support Network - Dedicated to empowering individuals affected by autonomic nervous system disorders. Their mission includes providing support, education, and resources to help patients live their best lives despite their condition. The website offers information on dysautonomia, treatment options, lifestyle tips, and ways to connect with others in the community.
Standing Up To POTS - A nonprofit organization dedicated to improving the lives of people with Postural Orthostatic Tachycardia Syndrome (POTS) through research, advocacy, and support. The website offers resources for patients, practitioners, and researchers, including information on POTS symptoms, treatments, and living with the condition. It also features educational materials, personal stories, volunteer opportunities, and fundraising events like the annual 5K/2K. The organization focuses on raising awareness and providing support to those affected by POTS.
The Dysautonomia Project - Aims to educate patients, healthcare providers, and communities about dysautonomia. The website offers educational resources, patient courses, provider tools, and a comprehensive book on dysautonomia. Founded by a patient, the project emphasizes that education is the primary treatment for these conditions. It also provides tools for symptom tracking and finding healthcare providers.