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Dysautonomia can sometimes leave us feeling isolated, like we are the only person on the planet with this confusing set of symptoms. You are not alone! Check out our Interactive Global Dysautonomia Map, look for individuals and support groups in your area, add yourself to the map and be counted. Join an online support group. There are tens of thousands of dysautonomia patients connecting online everyday!
Whether you are a seasoned professional with loads of energy or a teenage patient who is totally bedridden, we have volunteer role for you in our Awareness Army. Many of our volunteer positions do not require any experience - just a willingness to help.
Summary of Orthostatic Intolerance and Its Treatment
Dr. Peter Rowe, noted John Hopkins pediatric cardiologist and dysautonomia researcher, provides a patient friendly summary of Orthostatic Intolerance, Postural Orthostatic Tachycardia Syndrome and Neurally Mediated Hypotension. The summary includes an excellent description of non-pharmacological measures and drugs commonly used to treat these conditions and the common side effects. Dr. Rowe also offers suggestions for a high salt diet.
Salty Meals and Snacks
Many dysautonomia patients are advised by their physicians to increase their salt intake. Here are some salty recipes to inspire you.
Many dysautonomia patients are advised to exercise by their physicians, but exercising when you can barely stand up can be very challenging. Dysautonomia International has compiled tips from patients who have been there.
Medical Accommodation Wallet Cards
Dysautonomia International offers free wallet cards you can print out to help you get permission to lay down or sit down when you are having symptoms.
Financial Assistance Resource Directory
The Reflex Sympathetic Dystrophy Syndrome Association has an excellent comprehensive Financial Assistance Resource Directory for persons with chronic medical conditions. It includes information on federal, state, faith-based and non-profit resources available to disabled persons in the United States.
National Financial Resource Directory
U.S. residents can obtain information on financial resources available for various health conditions, prescription co-pay assistance, assistance with housing and nutrition, scholarships for students with disabilities and more.
List of Prescription Assistance Programs
Social Security Disability Tips
This flyer provides tips from the National Organization os Society Security Claimants Representatives. You can also find more helpful information on their website, including a hotline to call for a referral to an attorney who has experience in social security claims.
Scholarships for Disabled Students
This link provides links to many different scholarship programs for students with disabilities.
Patient Advocacy Tips
Dysautonomia International volunteers have compiled these tips for patients. You can teach yourself to be a better advocate for yourself. After all, who cares about YOU more than YOU?
Patient Advocate Foundation
Persons with life threatening or chronic illnesses can obtain free assistance from experienced patient advocates. They offer information regarding co-pay assistance, resources for uninsured or underinsured patients, dealing with insurance denials, COBRA coverage, Family Medical Leave Act, disability accommodations and more.
Know Your Rights
This legal guide was developed by the National Multiple Sclerosis Society, but most of the material is just as relevant to people living with dysautonomia as it is to people living with Multiple Sclerosis. The guide covers Social Security Disability, employment accommodations under the American's with Disabilities Act, family law matters and more.
Living with a dysautonomia and other chronic illnesses can cause emotional strain on individuals and families. If you are in crisis, please reach out for help. There are many people who want to help you.