Top 10 list for a patient with Dysautonomia

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

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Gratitude to Jodi Epstein Rhum for allowing me to repost her most helpful list.