Dysautonomia

Doctors wear blinders. Even the specialists tend to live in silos, and PCPs are overworked. No matter the reason, it’s undeniable that too many people with dysautonomic disorders go undiagnosed - Deborah J. Cornwall

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…

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Resources

 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.

Living with Bob

Living with Bob is about finding the funny when faced with the absurd and disheartening world of chronic illness. It doesn't take life too seriously, instead choosing to face the crapfest that is my health with a large dose of black humour.

The Dysautonomia Project

We’re a nonprofit with a mission of educating healthcare professionals, patients and communities about dysautonomia.

Dysautonomia Today

Dysautonomia Today provides informative content for those of us that are learning about dysautonomic conditions such as POTS, EDS, MSA, MCAS, and more.

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