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untonuggan) wrote2013-06-02 08:23 am
untonuggan) wrote2013-06-02 08:23 am
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All The Dysautonomia Linkspam
In case they are useful to some, here are some dysautonomia links. Dysautonomia is a thing I may have that causes dizziness and falling down and circulatory problems, as well as things like headaches, brain fog, peripheral neuropathy...and may be linked to things like fibromyalgia, CFS, etc.
I have another post about it that is more personal under an access lock, please PM if you would like to be granted access. I am making this post public as it seems it could be useful to the general dreamwidth community.
Note that I have not looked through all of these links in detail so I cannot vouch for their accuracy. Also note that some of them are very DOOM GLOOM EVERYTHING WILL BE TERRIBLE FOREVER while others are all EVERYTHING WILL BE WONDERFUL EVENTUALLY, so I don't know. Something in the middle probably? But don't take the doom and gloom to heart, is my advice.
Life With Ehlers-Danlos Syndrome - blog by someone who also has POTS (Postural Orthostatic Tachycardia Syndrome) and other invisible illnesses, note the POTS tag on the sidebar
- Yahoo group with teleconferences for a host of related syndromes, including Chronic Fatigue, Fibromyalgia, and Chronic Lyme as well as Orthostatic Intolerance and POTS
National Dysautonomia Research Foundation - Info about how the autonomic nervous system works for the layperson; also has a list of specialists
NIH Dysautonomia Page - doom and gloom but has links to potential research trials and other sources
Disautonomia Information Net - Patient-run information site and forum
Dysautonomia Youth Network of America - more sunshine and roses than the others; does have good info even if you are no longer a "youth"
I have another post about it that is more personal under an access lock, please PM if you would like to be granted access. I am making this post public as it seems it could be useful to the general dreamwidth community.
Note that I have not looked through all of these links in detail so I cannot vouch for their accuracy. Also note that some of them are very DOOM GLOOM EVERYTHING WILL BE TERRIBLE FOREVER while others are all EVERYTHING WILL BE WONDERFUL EVENTUALLY, so I don't know. Something in the middle probably? But don't take the doom and gloom to heart, is my advice.
Life With Ehlers-Danlos Syndrome - blog by someone who also has POTS (Postural Orthostatic Tachycardia Syndrome) and other invisible illnesses, note the POTS tag on the sidebar
- Yahoo group with teleconferences for a host of related syndromes, including Chronic Fatigue, Fibromyalgia, and Chronic Lyme as well as Orthostatic Intolerance and POTS
National Dysautonomia Research Foundation - Info about how the autonomic nervous system works for the layperson; also has a list of specialists
NIH Dysautonomia Page - doom and gloom but has links to potential research trials and other sources
Disautonomia Information Net - Patient-run information site and forum
Dysautonomia Youth Network of America - more sunshine and roses than the others; does have good info even if you are no longer a "youth"
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