Resources
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Dr. Alan Spanos, handouts for hypermobility
Alan Spanos is a pain physician in Chapel Hill, who has written a collection of print friendly handouts to help people with hypermobility get better medical care. I have a good fortune of working with him early on in my career and he shaped my future. They are written plainly enough for a patient to read and solid enough to hand to a doctor, which is a rare combination. The surgical and anesthetic precautions handout is the one I find myself pointing people toward most often. -
The EDS GP Toolkit
gptoolkit.ehlers-danlos.orgMade by Ehlers-Danlos Support UK with the Royal College of General Practitioners, this is a free online toolkit written for primary care. It is the thing to send to a doctor who is willing but has never been taught. It is British, so a few of the care pathways will not match ours, but the clinical content travels.
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The Mast Cell Disease Society
tmsforacure.orgA patient organization with free educational material on mast cell disease, including resources you can bring to an emergency department. If you came from the conference, you likely know them already, but patients often do not.
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If you have difficulty sleeping, this app will take you through some stories/videos to help you discover what your sleep issue might be, and how to correct it. This is free and educational.
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