Take this to the Emergency Room

Often when we need to go to the emergency room for symptoms related to your connective tissue disorder (EDS or HSD) and co-morbidities, we are not feeling well and may have difficulty communicating with the medical providers. Create a document for yourself (and put it in your “Go Bag”) so you have something to deliver when it is difficult to speak.

My name: __________________________________________________________________

My Date of Birth: _____________________

My diagnoses: __________________________________________________________________-

Symptoms I experience: _________________________________________________________

_______________________________________________________________________________

Things that have worked for me in the past: ________________________________________

_______________________________________________________________________________

_______________________________________________________________________________

CAUTION and things to know about me to maximize my care: ________________________

________________________________________________________________________________

Example of some possible wording below…

Ehlers Danlos Syndrome: Joint instability (Joints sublux and can dislocate easily) and tissue fragility

Postural Orthostatic Tachycardia Syndrome (POTS): tendency for low blood pressure, fluids and head down position are very helpful

Mast Cell Activation Syndrome (MCAS): Intense redness, itching, swelling, heat and pain to mechanical incision/wound, consider Benadryl and steroids

Difficulty with pain control, may need more pain meds than typical patient

Fragility of veins: IVs blow, difficult to stick (expert nurse or ultrasound guided preferred)

Craniocervical instability: Rotational and translational instability can cause head and neck pain (be careful with neck hyperextension if there is a need for intubation)

Closing after wound repair: Wounds easily (and often) dehisce, stitches pop open, increased risk of bleeding (consider placing stitches closer together (NOT tighter), leaving stitches in longer, adding a second layer of stitches, be careful with tourniquets, resistance to local anesthetic/additional local may be needed)