Dysautonomia

Dysautonomia involves disorders of the inner world or automatic functions of the body. As a result a person with dysautonomia often does not look sick on the outside but can be very unwell on the inside - The Dysautonomia Project

Dysautonomia

image by: The Dysautonomia Project

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5 Tips for the Newly Diagnosed Dysautonomia Patient

Dysautonomia has been a major part of my life... Those early days were scary. Even as a well educated woman, working in health care at the time, I felt alone and overwhelmed Not a experience I would wish to repeat or wish on anyone else.

Whilst, it is now easier to get clinical information about the various subtypes, diagnostic testing and treatments, it is still the information about what actually living with Dysautonomia is like, that is still lacking. And a quick scan around the forums tells me that many of my early experiences are still being repeated with patients all around the world.

So what do I wish someone had told me right back at the beginning? So many things come…

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Resources

Dysautonomia: What do you need to know in five minutes or less?

Like a lot of other patients I spend most of my life explaining Dysautonomia and correcting inaccuracies. It seems like an endless chore. From how to spell it, to what the hell is it, I have explained it more times than I can count.

Identifying Dysautonomia

Dysautonomia, an invisible illness, may be one of the most misdiagnosed medical conditions of all time.

5 Tips for the Newly Diagnosed Dysautonomia Patient

Dysautonomia has been a major part of my life for the last eight years. What I have recently realised is now the majority of my 30's (yes, I'm slow on the uptake). Those early days were scary. Even as a well educated woman, working in health care at the time, I felt alone and overwhelmed Not a experience I would wish to repeat or wish on anyone else.

Dysautonomia International

Our Mission...to identify the causes and cures for all forms of dysautonomia and to enhance the quality-of-life of people currently living with these illnesses.

Familial Dysautonomia Foundation

The Familial Dysautonomia Foundation works with the medical community and the government to further the concerns of people with FD. We collaborate with the medical community to educate doctors about FD, and to encourage medical governing bodies to recognize the need to require doctors to inform patients about the existence and risk of FD.

Defying Gravity

My journey with dysautonomia.

Dysautonomia Information Network

DINET provides information and personal stories on several types of dysautonomia.

FD Now

To deliver safe, effective treatments to the FD community by funding the fast-track research at the Laboratory for Familial Dysautonomia Research at Fordham University in New York, USA. To provide support to and advocacy for FD families and promote education and awareness to the medical community and public.