Companion Forms
Living with hypermobile EDS means juggling appointments, symptoms, and a healthcare system that doesn’t always know what to do with you. The forms and wallet cards below are some of the over 30 patient-ready tools included in The Hypermobile EDS Survival Handbook built to save you time, advocate for yourself more effectively, and stay prepared for whatever comes up, from routine visits to emergency rooms.
Jonathan Kost MD | Substack
Explore Dr. Jonathan Kost’s collection of articles, insights, and educational resources related to hypermobile EDS and associated conditions. Substack is free to join and access.
Printable Forms & Cards
The Hypermobile EDS Survival Handbook includes a complete set of printable forms and wallet cards designed to support your medical visits, improve communication with your care team, and prepare you for emergencies.
Visit planning and intake
Initial Clinician Intake Form
Helps you and your clinician prepare for the initial evaluation by organizing your history and streamlining the diagnostic workup for hypermobile EDS.
Established Patient Follow‑Up Form
Flags new or worsening symptoms and prompts you to prioritize your top three concerns and must-ask questions before each return visit.
Appointment Worksheet
Helps you organize your questions, visit goals, and follow-up action items so nothing falls through the cracks.
Symptom Tracking & Red Flags
Hypermobility Patient Symptom Intake Form
Supports a thorough, systematic review of your symptoms and history so that no important details are missed during time-limited appointments.
Symptoms Requiring Emergent Evaluation
Lists warning signs that may indicate a serious or life-threatening condition and require immediate or same-day medical attention.
Communication prompts
Patient–Provider Questionnaire Sheet
Provides ready-to-use question prompts so you never leave an appointment wondering, “Why didn’t I ask that?”
Emergency & Alert Wallet Cards
POTS Emergency Card
Alerts first responders and emergency clinicians to a POTS diagnosis and provides key information to prevent misdiagnosis and guide safe acute care.
MCAS Emergency Card
Summarizes your MCAS diagnosis, typical reaction patterns, and critical emergency instructions for mast cell–mediated events.
hEDS Surgical & Anesthesia Alert Card
Highlights key perioperative and anesthesia considerations for patients with hEDS to share with surgical and anesthesia teams prior to any procedure.
Emergency Room Alert Card
Provides a concise summary of your diagnoses, associated risks, and preferred approaches to care for use in any emergency department encounter.
Treatment & Emergency Care Guidance
hEDS Common Medications & Treatments
Provides an overview of medications and therapeutic approaches commonly used in the management of hypermobile EDS.
Emergency Room Guide for Clinicians
Share with emergency department staff upon arrival
Outlines essential considerations for emergency clinicians caring for patients with hEDS and related conditions.
Questions to Ask Your Emergency Room Practitioner
Review before or during any ER visit
A focused list of key questions to ask emergency providers to help ensure safe, informed, and condition-appropriate care.
