28th September. International Arnold-Chiari Type I Syndrome Day

Published by ICSEB at 28 September, 2024

September is the International Arnold-Chiari I Syndrome Awareness Month, commemorated on the 28th, with the main aim of raising awareness about this condition.

This year, just after the conclusion of the Summer Paralympics held in Paris on the 8th of September, we at the Institut Chiari of Barcelona (ICSEB) have been deeply moved by the incredible examples of personal resilience displayed by several outstanding international athletes affected by this condition during this iconic sporting event.

In our opinion, there is no better group than Paralympic athletes to raise the visibility that patients affected by this condition deserve. Arnold-Chiari Type I Syndrome is identified by the descent of the cerebellar tonsils below the foramen magnum. It is caused by another condition – the Filum Disease – characterised by the excessive tension that the Filum Terminale ligament exerts on the entire nervous system from the embryonic stage. Its symptoms can include headaches, paraesthesia, instability, chronic pain throughout the spine, ataxia and more.

Dr. Guttman – who organised the first Stoke Mandeville Games for veterans in 1948, which later evolved into the Paralympic Games in 1960 – stated: “Until then, the problem for these men, women, and children was a lack of hope because, as doctors, we not only had to save their lives, but also restore their dignity and ensure they became happy and respected citizens.”

At ICSEB, our goal is the same for our patients: to restore their dignity and help them rediscover hope, which is often lost amid the fear of the progressive deterioration caused by their condition. Our exclusive Filum System® (FS®) method, applied to Arnold-Chiari Type 1 Syndrome, eliminates the root cause of tonsillar descent—the Filum Disease—by severing the ligament with a minimally invasive procedure. This intervention halts the progression of the disease, significantly improving the quality of life for those affected by it.

This 28th of September, we want to congratulate the athletes Dimitri Jozwicki, Mariana Ribeiro, and Andrea Miguélez, representing France, Brazil, and Spain, respectively, as well as all those who have participated in these Paralympic Games.

Your example, strength, resilience, passion, and all the incredible qualities you display teach us what it means to live with Arnold-Chiari Type I and fight every day despite the challenges.

Thank you so much!