The Institut Chiari & Siringomielia & Escoliosis de Barcelona (ICSEB) is once again joining the global celebration of Rare Disease Day.
Since 2008, the ICSEB has been dedicated to conditions considered rare — disorders that affect thousands of people, each one with their own uniqueness.
The Filum Disease is a new etiological concept (related to the cause of the disease) that brings together Arnold–Chiari Syndrome Type I, idiopathic syringomyelia, cranial malformations of the craniovertebral junction, and other related conditions. These uncommon and not well known disorders, with symptoms that manifest uniquely in each case and express themselves differently in their complexity, perfectly reflect the typical characteristics of rare diseases: delayed diagnosis, high treatment costs, limited Access to therapies — due to cost or the travel they require — loss of autonomy, chronic pain, reduced quality of life, and the increasing burden placed on families and caregivers.
The ICSEB neurosurgical team offers a truly “rare” treatment for these rare diseases — an approach that is original, exclusive and unique worldwide, fully aligned with our etiopathogenic interpretation of the problem.
According to the clinical findings of Dr. Royo-Salvador, the core issue shared by this group of conditions is an abnormal traction exerted by a ligament known as the filum terminale. In affected patients, this ligament is under excessive tension, transmitting that traction to the entire nervous system.
Our proposed solution is a structured set of methodological protocols known as the Filum System®. This system aims to eliminate the underlying cause of these conditions, halt their progression, and—when possible—reverse their course, thereby promoting the recovery of functions and the restoration of reversible lesions.
Based on an understanding of the disease, following minimally invasive surgical treatment, subsequent rehabilitation, and long-term follow-up for pain management and postoperative monitoring, our patients have the opportunity to improve their quality of life and return to living as they had hoped.
In honour of the uniqueness of each case, the symbol of this day is the zebra, because each stripe on its coat is different from the others.
Following the spirit of today’s social media initiatives, we are “showing our stripes” by sharing the journeys of many patients who have been followed and treated by our specialists. These stories highlight the diverse paths each individual has taken to reach, in their own unique way, the same conclusion of recovery.
We invite you to explore the numerous testimonials of our patients’ medical experiences, which reflect their extraordinary stories before and after receiving our care:
https://institutchiaribcn.com/en/video-testimonials/
#ShowYourStripes!