Why am I so chipper, you may ask?

(Forgive me yall, Im getting a bit scientific in here… even though it’s a month since the pre-print came out)

Well. Have you ever felt really and truly seen? By a person, or a place, or even a…. Research Paper? (Hahahaha yes I’m this big of a nerd).

This is long, and you don’t need to read it all. If you want to understand my stuff, you probably want to read this mapping of my conditions into the framework. You might need to read the full explainer below, or maybe the chart posted above is enough for you :D (I’m amazed I could pull this together, even though I did not write most of it…)

My surgeon, Dr Paolo Bolognese,  the surgeon of many friends, Dr Petra Klinge. and several other big names in chiari, tethered cord, complex neurosurgery,  EDS (Ehlers Danlos Syndrome)…  have come up with a “new” type of EDS, and well.. it is me.

Neuro-EDS (find the original pre-print research here, it isn’t peer reviewed yet,  ut is heavily based on a large set of cohorts of us  ) is a newly defined phenotype of  patients with Hypermobile Ehlers-Danlos Syndrome (hEDS) and generalized connective tissue laxity, structural instability and tissue compliance can affect both the

central and peripheral nervous systems.

Here’s a short summary of the research, followed, for the geeks among us,  by how my own medical conditions fit into it. I have often wished for more of a unifying theme, and a way to explain my illness, choices, challenges, experiences. I finally got my wish.

SUMMARY OF THE NEURO-EDS FRAMEWORK:

(Borrowed with respect  from the wonderful people at Chronic Pain Partners - follow the link for their full article which is excellent, this is an excerpt.)

If you have hEDS or HSD, it probably isn’t news to you that these conditions are sometimes associated with

neuro-related comorbidities such as postural orthostatic tachycardia syndrome (POTS), craniocervical instability (CCI), tethered cord, and intracranial hypertension, among

others. However, a new concept paper, released as a preprint on August 10, 2026, suggests that there may be

a subgroup of people within hEDS, HSD, and other heritable connective tissue disorders who share a recognizable pattern of multiple complex neurological manifestations that tend to cluster together. 

This subgroup also appears to represent some of the most severely a!ected patients within the broader hEDS/HSD population. The authors of this paper argue that this phenotype (a recognizable pattern of features) should be called “Neuro-EDS,” and suggest that these seemingly

unrelated conditions may actually be interconnected and caused by a shared underlying disease process.

Breaking Down the Neuro-EDS Phenotype

To organize the wide range of conditions included in the Neuro-EDS phenotype, the authors group them into two domains.

The Cranial and Spinal Domain

This domain may contribute to autonomic, vascular, neurological, and inflammatory ecfects. 

Conditions include:

Neuro-Autonomic-Inflammatory DomainThis domain may influence how these conditions are expressed, degree of symptoms, as well as treatment

and recovery processes. 

Conditions and issues include:

Dysautonomia: Dysfunction of the autonomic nervous system, including:

POTS and other forms of orthostatic

intolerance

Gastrointestinal dysmotility

Thermoregulatory dysfunction

Urinary dysfunction

Mast Cell Activation Syndrome (MCAS): A condition in which mast cells are overactive and release chemicals that cause repeated allergy-like or inflammatory symptoms throughout multiple areas of the body.

Small Fiber Neuropathy (SFN): A type of peripheral neuropathy in which the small nerve fibers are damaged. These fibers include sensory fibers, which carry pain and temperature signals, and autonomic fibers, which help control automatic body functions. Damage can therefore cause: 

It is important to remember that these domains are not mutually exclusive. In fact, they are highly interconnected, influencing one another, sometimes in both directions. This overlap can make it difficult to separate cause from effect. For example, intracranial hypertension can cause headaches and sleep disturbances, but so can POTS. POTS can also cause cognitive dysfunction, but so can venous outflow disorders. Venous outflow disorders may affect how the autonomic nervous system functions or cause intracranial hypertension. It’s a complex web.