Support a Pediatrician's Fight with Ehlers Danlos Syndrome

Hi all- I'm unfortunately in a bad way. A very, very bad way and I'm hopeful my village can support me. I have a group of poorly recognized, even more poorly understood disorders related to Ehlers Danlos Syndrome. I need funding support to get needed specialty care, which will include a month-long stay at an EDS clinic near DC along with very costly procedures/possibly surgeries. (And it's all out-of-network, because of course it is.) Now that I've found this specialty clinic, I'm experiencing hope for the first time in nearly 6 months. I deeply appreciate any contributions to help me pay for this expert care. I assure you that donations received will go toward my medical care. If there happens to be surplus, funds will then go directly into the creation of an Ehlers Danlos clinic in Georgia. If you’d prefer Venmo, I’m @taylor-maturo to avoid fees.

For those interested in background:

I'm a 39yo board-certified pediatrician who can't work. Shoot, let's be honest, can't function. I've had to step away from Pediatric Infectious Diseases Fellowship and have been on unpaid leave. I've become debilitated by recently realized hypermobile Ehlers Danlos Syndrome with numerous commonly associated conditions including mast cell activation syndrome (MCAS), postural orthostatic tachycardia syndrome (POTS, a form of dysautonomia), and most pressingly, upper cervical instability (UCI) with suspected occult tethered cord syndrome. Paired with UCI are positional drop attacks due to vertebral artery occlusion/vertebrobasilar insufficiency along with positional non-thrombotic cerebral venous occlusion contributing to positional increased intracranial pressure.

Broken down into plain English, I have an inherited connective tissue disorder (meaning I was born with it) that has recently grown into a real beast of a problem. Since every single organ system has connective tissue, literally every single bodily system is affected. Anyone who says the phrase "Hypermobile EDS isn't a big deal" needs to educate themselves. Hypermobile EDS is currently ruining my life.

Not only am I in constant pain from joint instability and frequent muscle spasms, add on that part of my immune system has gone haywire (MCAS) and pair this with having an autonomic (=automatic, fight/flight, rest/digest) nervous system on the fritz.

The big trigger for my rather abrupt deterioration is that my head is literally not attached securely to my backbone, putting significant stress on my brainstem and causing blockages of blood flow to/from my brain. I'm instructed to wear a rigid C-collar (neck brace) nearly 24/7, including while I sleep. My lower spinal cord might also be "stuck" or tethered, causing additional strain on it. This combo of disorders is so disabling because I can't tolerate being upright for long, I'm losing the function of my hands, my vision is doubled and blurry, and the fatigue is overwhelming.

The cherry on top of this sundae of horrors? There are VERY few experts to help. I have a group of conditions that aren't understood by most in the medical community. Many providers won't acknowledge that MCAS is a real entity. The Ehlers Danlos Syndromes and associated conditions are the single most neglected cluster of disorders in modern medical history. They are tagged as rare diseases, but in reality, they are MUCH more common than outdated research states. They're not uncommon, they're simply uncommonly diagnosed. While there are numerous reasons for this, a whopping one is that providers aren't trained on EDS. It disproportionately affects women, particularly neurodivergent women, and medical education is still stuck in teaching the default medical model which caters to neurotypical men. Add on the well-known phenomenon of ignoring women's medical concerns, et voilá!, you can see the issue.

I have no medical home. My care to date has been horribly incompetent at best and outright harmful at worst. I've had to advocate more than anyone should ever have to. Despite being a physician, the amount of medical gaslighting I've encountered has been soul-crushing. Sadly, my story is NOT unique. Through local, national, and international support groups, I've learned that my journey has been better than the norm due to my physician privilege. Absolutely unacceptable, I say!!!

My promise to you all- I will establish an Ehlers Danlos clinic for Georgia if it's the last thing I do. I refuse to let this injustice continue, but I have to be functional enough to do it! Contributing to my medical care will help get me well enough so I can get back to caring for others. It's what I'm on this earth to do.