An open letter to Arnold-Chiari I, idiopathic Syringomyelia and Scoliosis patients, and those affected by other associated conditions

There is a multitude of information circulating in the professional domain as well as in communication channels that, if on the one hand it offers different perspectives, on the other, it can complicate understanding and decision making. Medical and health professionals have a responsibility commitment to the sick, to transfer information as clear and exhaustive as possible, to allow them to make the most appropriate decisions about their own health.

The Institut Chiari & Siringomielia & Escoliosis de Barcelona (ICSEB) promotes education and the dissemination of knowledge, being aware that all this affects the patients’ decisions about her/his health and safety. It is on that account that we have prepared this open letter. 

We would like to alert about the possible risks of relying on professionals who do not act with due prudence when offering a surgical treatment that they claim is the same as the one practiced by our team. As a matter of fact, they do not have the necessary knowledge nor the experience to achieve our excellent results.

Understanding the difference: Tethered Cord Syndrome, Occult Tethered Cord Syndrome and the Filum Disease

Rare Disease Day - 28 February 2019 - Association AI.SAC.SI.SCO

Today, 28 February 2019, the 12^th edition of Rare Disease Day is celebrated worldwide. This year’s theme revolves around “bridging health and social care”.

AI.SAC.SI.SCO. (Associazione Internazionale Sindrome d’Arnold-Chiari, Siringomielia e Scoliosi – Arnold-Chiari Syndrome, Idiopathic Syringomyelia and Idiopathic Scoliosis International Association):

·   Supports the Chiari & Scoliosis & Syringomyelia Foundation, which promotes the development of scientific research projects;

·   Bears the logo of the Institut Chiari & Siringomielia & Escoliosis de Barcelona (ICSEB), as its members are patients who underwent the sectioning of the Filum Terminale according to the Filum System^® health method. This protocolized method has been designed for the diagnosis, treatment and care of patients with conditions that are considered to be rare, mainly the Arnold-Chiari Syndrome Type I, Idiopathic Syringomyelia and all cranio-occipital malformations and related conditions included in the etiological concept of the Filum Disease. According to the research of the ICSEB’s Director, Dr. M. B. Royo-Salvador, the Filum Disease is the root cause of each one of these manifestations;

·    Offers a point of reference for patients and their families through dialogue, by sharing members’ personal experiences and points of view via social networks and meetings. The purpose is to alleviate the loneliness of those looking for information, desperate after receiving diagnosis and treatment options that can be devastating both physically and psychologically;

·    Helps to find information on the rights of all EU citizens to access cross border quality healthcare.

The spirit of this year’s Rare Disease Day calls on this same social-health care focus. It aims at promoting collaboration and interconnection between medical and social services, in order to build networks, programmes and projects to better assist “rare” patients and their families. A better understanding of the disease in all its aspects and a greater presence in the territory of residence can provide patients with solutions that help manage their condition and possibly improve it.

The Institut Chiari and the AI.SAC.SI.SCO Onlus International Association join forces to improve the quality of life of patients and announce the recent signing of a collaboration agreement. The Association membership allows access to special conditions in the services provided by the Institute to its patients.  

For more information: https://institutchiaribcn.com/en/agreements-and-advantages/

Both the ICSEB and AI.SAC.SI.SCO wish that this initiative can contribute to a better future for Filum Disease patients and hope that their “rare” condition will find understanding and support among social, medical and research professionals.

Celebrate Rare Disease Day with us!

Contact AI.SAC.SI.SCO Onlus: http://aisacsisco.eu/index.php/contact

Preferred contact languages: French and Italian.

Other languages: English (only via email)

Patient Testimonial - Pain tremendously improved

We are grateful to share yet another patient story with you today.

ICSEB patient Elizabeth from Philadelphia tells us how for a long time she was receiving diagnoses related to anxiety, depression and fibromyalgia before being diagnosed with Syringomyelia in 2015. Hear more from her in this video, where she explains how she found the Institut Chiari & Syringomyelia & Scoliosis of Barcelona and how the treatment helped her situation.

 

Chiari Malformation? Some core aspects of interest

Our first post in the new year recaps some bullet points on the Arnold-Chiari Syndrome Type I, which is often referred to as Chiari malformation.

The Arnold-Chiari Syndrome indicates the herniation of the lower part of the en-

cephalon and the cerebellum, the cerebellar tonsils, through the foramen magnum

towards the spinal canal.