Publicado por CSSF el 28 February, 2021
28 February 2021, Rare Disease Day
In the context of the Rare Disease Day, at the Chiari & Scoliosis & Syringomyelia Foundation (CSSf) we would like to draw attention to the strong impact that living with a rare disease has on the different spheres of life of those who suffer from it and the great difference that having a support community can make.
Having support, being able to share one’s own experience is the first step in making each patient’s history visible. The collective force of shared histories of struggle and overcoming adversities can open paths towards a future of hope, in which each patient is given the opportunity to talk, be heard and act.
The deterioration of the quality of life is the main factor that leads a patient to investigate in search of answers, be it through a medical consultation, publications, or forums and patient associations. Having the right information available in a timely manner can make the difference between improvement and deterioration, thus avoiding making a wrong decision, with possible severe consequences for the patient’s health.
Patients operated at the Institut Chiari & Siringomielia & Escoliosis de Barcelona (ICSEB), with a diagnosis of Filum Disease* (including conditions that are currently considered to be rare, such as Arnold-Chiari Syndrome type I and Idiopathic Syringomyelia), refer to recurring elements in their testimonials: the appearance or worsening of symptoms that significantly limit their usual daily activities; a long journey from one medical consultation to another, searching for the correct diagnosis; the delay in the application of the adequate treatment.
For all these reasons, the Chiari & Scoliosis & Syringomyelia Foundation, together with the Institut Chiari & Siringomielia & Escoliosis de Barcelona and the Filum Academy Barcelona, promote research, teaching and dissemination regarding these conditions. Thanks to this, today there is a minimally invasive treatment for the Filum Disease and the related conditions, which allows avoiding severe complications (or even death).
Let’s share experiences and spread knowledge.
Every challenge and every triumph can help save lives!
- (*) Royo-Salvador, M.B., Fiallos-Rivera, M.V., Salca, H.C. et al. The Filum disease and the Neuro-Cranio-vertebral syndrome: definition, clinical picture and imaging features. BMC Neurol 20, 175 (2020). https://doi.org/10.1186/s12883-020-01743-y