I’ve been sick for a long time. Back when it all got bad I didn’t think illness would last this long; any information I found, I read and absorbed, talked about with my hubster or forwarded to my doctors. I certainly didn’t save the links or think I’d be collecting them. So, because this blog is a resource as well as a record, I am going to go through and find and rate the top ten links I’ve been looking at lately.
Do any of them relate to you too?
I’d love your comments or suggestions for adding to this page of links, all recommendations welcome.
Michelle is the literary mama of the Dysautonomia communities in Australia and New Zealand. This weekend, she is presenting at the Emerging Writers Festival in Melbourne. She is loved by all for her humour and her intellect. As a neuropsychologist, her scientific approach and her hilarious and heart rending explorations into the realities of Dysautonomia make her blog a ‘Go To’ resource for so many of us:
about treatable forms of Dysautonomia. Still my source of hope. Recorded during the Syncope and Dysautonomia Symposium in the USA, 2011.
Dr Steve Vernino, Associate Professor of Neurology
UT South Western Medical Center, Dallas
This PDF for clinicians…
From the Mayo Clinic. A flow chart providing information about the testing algorithm for autoimmune dysautonomia:
caters to the information needs of Patients and Doctors. It is well organised and easy to use. It was founded by Lauren Stiles, a big mover and shaker in the Dysautonomia community in the States. I love her passion to help people find answers, even after she has already found her own:
of Autonomic Disorders of the Neuromuscular variety. From the Neuromuscular Disease Centre, Washington University USA
over on Dysautonomia International about promising research into the condition Postural Orthostatic Tachycardia Syndrome. Research in the area of Autonomic Dysfunction is not as prevalent as the more frequently diagnosed conditions in the world of medicine. This latest study is giving POTS patients new hope! New Evidence of Auto-immunity in POTS:
Dinet and Dynakids were one of the original Dysautonomia information portals and patient forums. There is much good information to be found here. They are US based but have an international following:
This video about POTS…
was the first time I saw doctors and patients interviewed about what it is like, the aetiologies and symptoms of Postural Orthostatic Tachycardia Syndrome. Still has many useful and relevant sections and is helpful for family and friends who don’t understand what and why POTS patients feel, living with POTS:
about management of patients with dysautonomia who need a general anaesthetic for surgery:
of Autonomic Testing.