Ehlers Danlos Specialist and Upright MRI

I am trying to raise the funds to make it possible for me to have an upright MRI and to also see a connective tissue specialist in Chicago. The upright MRI is not covered by my insurance and there is only ONE place in this area that has this special MRI machine. Some of you may not know, I was diagnosed last year with a rare genetic connective tissue disorder called Ehlers Danlos Syndrome Type III (hEDS). It also comes along with a lot of comorbidities such as dysautonomia, Mast Cell Activation Syndrome, migraines, narcolepsy, degenerative disc disease, Cranio Cervical Instability (CCI), and much more. I have been diagnosed with all so far, except CCI. My physical medicine and rehabilitation doctor believes that I have CCI and that it is causing Intracranial Hypertension along with cervical spine nerve compression. That would explain a lot of my daily worsening symptoms. The only way to accurately diagnose CCI is with an upright MRI.

There are not many doctors in this area that are familiar with EDS, so I am not getting the care or management that I so desperately need in order to have a decent quality of life. One doctor I was referred to is in Indiana and has a 3 year wait list. He also does not accept my insurance. The other one in Chicago does not accept any insurance and all services are to be paid out of pocket.

I've been hitting walls left and right. It's extremely depressing to not get the care I need to get better. All because of the type of insurance that I have. If you've read this much, thank you. Any kind of support is deeply appreciated. ❤️

I'm including some links in case anyone wants to learn more about these conditions.

https://www.uprightmrideerfield.com/what-is-cranio-cervical-instability-and-how-is-it-detected#:~:text=Upright%20MRIs%20assess%20patients%20in,diagnose%20a%20person%20with%20CCI.

https://www.ehlers-danlos.com/2017-eds-classification-non-experts/hypermobile-ehlers-danlos-syndrome-clinical-description-natural-history/