Resources

These are private Facebook groups and have not been vetted by TDP. Regarding medical advice found in support groups: TDP recognizes the value of dysautonomia support groups for patients dealing with this chronic illness. Before following medical advice or treatment options presented in these groups, patients should discuss them with their provider. (The number of followers may vary.)

The Dysautonomia Support Group   19k

Dysautonomia Support Group  785

Autonomic Dysfunction Group  4.4k

Dysautonomia: All We Know so Far  9.3k

Dysautonomia and Disney 2.1k

Autonomic Dysfunction Support Group   701

Dysautonomia Connection   17k

Athletes with Dysautonomia  1.1k

POTS Syndrome Dysautonomia Group  13k

Dysautonomia Support Network—SE Regional Community 981

Dysautonomia Support Network—Caregivers Community  900

Autoimmune with Autonomic Dysfunction (Autoimmune Dysautonomia)  3.4k

Michigan Friends with Dysautonomia and POTS   1.1k

POTS/Dysautonomia with Depression/Anxiety Support Group  1.9k

POTs EDS Dysautonomia Awareness Education and Support  5.7k

People with Dysautonomia and Ehlers Danlos Syndromes Support  3.2k

POTS and Dysautonomia Support  1.1k

Teens with Dysautonomia  499

Dysautonomia: Postural Orthostatic Tachycardia Syndrome (POTS) Group   5.3k

Dysautonomia Support Group for Age 50+   187

POTS (Dysautonomia) and Invisible Illness WORLDWIDE   4k

Dysautonomia Support Network—Global Community   1.4k

Other Relevant Organizations

The Ehlers-Danlos Society

https://www.ehlers-danlos.com

Naughty Little Mast Cells

https://www.naughtylittlemastcells.com/

The Mast Cell Disease Society

https://tmsforacure.org/

TDP Online Education

Free online education is at the heart of our mission. As TDP grows, so does our library of online articles and video courses for providers and patients. 

TDP Patient Education Center

This resource includes articles and videos discussing topics that fall under these categories:

Dysautonomia

POTS

Co-existing Conditions

Managing Dysautonomias

Research

TDP Provider Courses

Providers can access courses taught by leading experts in autonomic medicine and apply that knowledge to diagnosing and treating patients with autonomic disorders. Patients have access to information about diagnosing, treating, and living with autonomic disorders, which empowers them to manage and advocate for their own healthcare.  This includes a one-hour patient education course.  

Patient Support and Assistance

School

Most schools have a system in place to help students who have special needs by creating an Individualized Education Program (IEP). It may be helpful if students with dysautonomia create an IEP with their school administration for handling schoolwork and other school activities when symptoms interfere with school.

To learn more about creating an IEP visit https://www.parentcenterhub.org/pa12/

Work

Depending on your dysautonomia you may or may not be able to work. If you are able to work, it is helpful to think through special accommodations you may need to help you be successful in your work. Some with more severe symptoms may require many accommodations while others may not require any at all. It is helpful to discuss with your doctor and also discuss with your employer.

To learn about reasonable accommodations in the workplace visit https://adata.org/factsheet/reasonable-accommodations-workplace

To learn more about creating an IEP visit https://www.parentcenterhub.org/pa12/

Financial

Applying for Disability or Financially Assistance

The process of applying for disability or financial assistance can seem overwhelming. It is often helpful to have a friend or family member help when beginning the application process. Two keys to completing the applications are very helpful:

Make sure to complete every question on the application in full. If an answer is left blank, it is easy for the assisting organization to deny the claim.
Give specific and detailed examples of the need for assistance.

For example, instead of saying, “needs help walking.” Clarify with specifics such as, “I use a seat cane when walking short distances of 50 ft. or less and I use a wheelchair that is pushed by a family member when needing to go 100 ft or more.”

In some cases, the initial application is denied. We encourage individuals who need assistance to respectfully appeal the initial decision and include more specific examples which demonstrate the true need for assistance.

National Financial Resource Directory

https://www.patientadvocate.org/explore-our-resources/national-financial-resource-directory/

To learn more about creating an IEP visit https://www.parentcenterhub.org/pa12/