Over time I will add information about groups, books, websites, products, and whatever else might be helpful.  For now, this is a work in progress.  I want you to know that I know how hard you work to manage all that you manage.  Each person's experience with Dysautonomia is unique.  What is universal is that it is invisible, it is challenging and it is often frustrating.

I look forward to hearing your story.  I want to know how you have come to understand yourself. 

I hope that having some resources at your fingertips will make the search for information a little easier. 

POTS Place: A Guide to Postural Orthostatic Tachycardia Syndrome   http://www.dinet.org/

Tervis water bottle - 24oz microwave and diswasher safe bottle.  Good for hot and cold beverages - comes in many different styles and is able to be personalized.  Available at many local stores as well as at     http://www.tervis.com/

Zensah compression leg sleeves- for gentle and comfortable compression.  Also stylish.  Come in many colors.  Can be found in travel stores, on Amazon, and at        http://www.zensah.com/

This article is a nice overview of POTS and Neurally Mediated Hypotension.  A kind of primer.  Hope you find it informative and helpful.    http://www.cfids.org/webinar/cfsinfo2010.pdf

and for a little universal understanding and humor, may I recommend the short, little book, You Know You Have Postural Tachycardia Syndrome (POTS) by Hannah Ensor (2009).    This is also the link to Hannah Ensor's website where you can find her blog and so much else.  Well worth checking out!!!  http://stickmancommunications.co.uk/

  Dysautonomia International is "a non-profit founded by patients, caregivers, physicians and researchers dedicated to assisting peaople living with various forms of dyautonomia."  (quoted from the foundation website)   http://www.dysautonomiainternational.org/  Jodi Epstein Rhum volunteers as the foundation's Vice President.

Pots: Together We Stand.  Riding the Waves of Dysautonomia by Jodi Epstein Rhum , available on Amazon.com.  The author donates 10% of the proceeds of this book to Dysautonomia International.

UPCOMING:  2014 Dysautonomia International Conference!  Consider this a treat to yourself!

With Permission from and Thanks to  Jodi Epstein Rhum (author of Together We Stand: Riding the Waves of Dysautonomia) I am adding this TOP 10 list (May 23, 2014)

Top things any Dysautonomia patient should do:

1. Never give up hope

2. Drink plenty of fluids and exercise when you can.

3. Accept that you have a syndrome but do not let it define you.

4. Always fight and understand that you will win. POTS can only beat you, if you let it.

5. Surround yourself with positive, supportive doctors, friends, etc that will support and go to bat for you. You have the power to choose your team: make it a good one.

6. Do what you can when you can and forgive yourself when you cannot.

7. Learn all you can about your syndrome, so that you can speak intelligibly and credibly to your friends, doctors, co-workers and family members.

8. Do not assume that people around you will understand or will want to understand what you are going through. This includes family members.

9. Listen to your body.

10. Become involved with advocacy. Help spread awareness among family members, doctors, friends, teachers, etc.. Join support groups with people who do understand. Purchase a copy of POTS, Together We Stand( press link below to purchase a copy. 16% of profits will go to spreading awareness and raising money for Dysautonomia research.) and use it as a life-line and resource. Bring it to doctors' visits and to staff meetings with your children's teachers. Join Dysautonomia International and be a part of changing the face of this syndrome forever.http://www.dysautonomiainternational.org/page.php?ID=143

Dysautonomia International - Welcome to Dysautonomia International's Amazon Store

When you shop through our Amazon Store below or our Amazon search box to the right, Amazon donates 6% of the purchase price of anything you buy to...

DYSAUTONOMIAINTERNATIONAL.ORG

For more information about this book, click on the image to be linked to its Amazon site.