CHIARI EDS CENTER

We are called the CHIARI EDS CENTER because of our double focus: Chiari I Malformation (CMI) and Neuro-EDS

CHIARI I MALFORMATION (CMI)

We have been treating Chiari I Malformation (CMI) since the mid 90’s.
CMI is a congenital disorder affecting the border zone between the brain and the spinal cord. CMI is often linked to Syringomyelia (SM), and other pathological conditions.

NEURO-EDS

We have been treating Neuro-EDS since the inception of this field, 25 years ago.
Neuro-EDS consists in a group of pathologies rooted in Ehlers-Danlos Syndrome (EDS), as well as other Connective Tissue Disorders, impacting different areas of the Central Nervous System, including among others:

• Craniocervical Instability (CCI)
• Tethered Cord (TC)
• STING/Eagle Syndrome
• Idiopathic Intracranial Hypertension (IIH)
• Intracranial HYPOtension

Relatively speaking, CMI is a rather simple problem, while NEURO-EDS is not.

Because of the intrinsic complexity of NEURO-EDS, we strongly believe that patients affected by these conditions need to be evaluated and treated as a whole. Therefore, during the last 25 years, we have developed diagnostic pathways and dedicated surgical techniques to address ALL the conditions of the NEURO-EDS spectrum. This approach prevents fragmentation of the patient’s care, allows a better vantage point of the overall clinical picture, and provides an ideal springboard for further clinical discoveries in this field.

For a complex problem like NEURO-EDS, you need two other important ingredients:

1. A trained, cohesive, and dedicated Multidisciplinary Team, addressing every aspect of the Clinical Care
2. A Research Team, addressing both Clinical Research and Basic Science.

Because of our approach, our structure, and our experience, our Center has been recognized as a Center of Excellence by the Ehlers-Danlos Society.

Postquam Visibile, Numquam Neglectum

We found this Latin sentence to be the most fitting motto for our Center, since it can be translated in two ways, from two different points of view.

For many Physicians who first encounter NEURO-EDS, some aspects of its diagnosis can be quite perplexing, but once certain patterns are recognized, they cannot be unseen.

Once you see, you can’t unsee.

Many NEURO-EDS patients have experienced discrimination, being first mid-diagnosed, then labeled as psychiatric cases, then falling through the cracks, and ultimately becoming neglected.

But not here. Once you are seen, you cannot be ignored.

NOTE FOR THE ERUDITE: VISIBILE and NEGLECTUM are gender neutral. Therefore, the second translation of the motto does not refer to patients as individuals, but as clinical cases.