Links to related websites

Here are a few links that I’ve found helpful both as a person with EDS as well as a professional treating others with EDS.

hEDS Diagnostic Criteria

Emergency Card for Patients with hEDS

EDS Wisconsin

The Mighty (EDS blog)

Chronic Pain partners (community resources)

Dysautonomia International

Wendy’s favorite book about EDS

An amazingly supportive book written by a patient advocate (and other medical providers)

Jeannie DiBon “The Zebra Club” podcasts and video

List of famous celebrities who have EDS

“We are Visible” documentary

Several phone apps that might be helpful:

1. The Ehlers-Danlos Society app can guide you through the diagnostic criteria and print out a report to share with your health care providers. It links to educational resources on the website.

2. The POTS Buddy, TachyMon, and POTsie apps allow you to track your POTS symptoms and triggers. They link to smartwatches for continuous HR monitoring. POTS Buddy will do a 10 minute Stand Test and generate a report. (remember to do POTS test prep if you are not currently feeling symptomatic - if you are managing your POTS well, your test may be negative even though you have POTS: https://batemanhornecenter.org/.../NASA-Lean-Patient...).

3. MCAS trigger and symptom trackers: MCAS Tracker and MastCell Tracker.

4. Intolerances is an app that tells you what foods have histamine or are FODMAP foods. Strawberry logo.