I regret I will not be able to see new patients before October 2023. Nor will I be establishing waiting lists for new appointments. After October 1, this page will give details of new appointment procedures. So, if you’re seeking a new appointment, check this page as soon as possible on or after October 1.
I will be writing several new articles for this website between now and October. They will aim to give people with EDS information to pass to their doctors, to improve their medical care.
But you can’t get treatment for an Ehlers Danlos Syndrome unless you have a diagnosis, and hardly any doctors are now prepared to make that diagnosis. The first item under “Articles” on this website explains how this has come about. If this is your predicament, you could try a new approach. You can use a protocol, published on this website, to put together the information needed to make an EDS diagnosis. You can then take your findings to your primary care doctor, or nurse practitioner. You can ask them to check what you’ve found, and see if you “meet criteria for an EDS diagnosis.” The protocol spells out what the practitioner needs to do, even if they previously knew nothing about the diagnostic criteria. It also provides the reassurance that they, and you, are using diagnostic criteria that were set up by EDS specialists and have been used for several decades. My hope is that this procedure will persuade some of them to make a diagnosis that will lead to better medical care for you.
The diagnostic protocol is titled “EDS Diagnosis for Primary Care Practitioners” and is third in the list under the “Articles” tab on this website.
Alan Spanos, MD, MA