Together We Are Stronger®
Syringomyelia, Chiari Malformation and Rare Diseases are affecting our communities. Its upto all of us to help make a difference for our communities. Some disease or disorders may have cures while others do not have a cure so its important for us to help those affected find ways to live better.
Canada: A rare disease is a condition affecting fewer than 1 person in 2000 in their lifetime.
USA: A disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time.
Europe: In Europe when a disease affects fewer than 1 in 2000 person, the disease is defined as rare. One rare disease may affect only a handful of patients in the EU (European Union), and another touch as many as 245,000. In the EU, as many as 30 million people alone may be affected by one of over 6000 rare diseases existing.
80% of rare diseases have identified genetic origins whilst others are the result of infections (bacterial or viral), allergies and environmental causes, or are degenerative and proliferative. 50% of those affected are children.
Chiari Malformations (CM)(key-Ar-ee—mal-for-May-Shun) are structural defects in the cerebellum, the part of the brain that controls balance. Normally the cerebellum and parts of the brain stem sit in an indented space at the lower rear of the skull, above the foramen magnum (a funnel-like opening to the spinal canal). When part of the cerebellum is located below the foramen magnum, it is called a Chiari malformation.
Syringomyelia (sear-IN-go-my-EEL-ya) is a disorder in which a cyst forms within the spinal cord. This cyst, called a syrinx, expands and elongates over time, destroying a portion of the spinal cord from its centre and expanding outward. As a syrinx widens it compresses and injures nerve fibres that carry information from the brain to the extremities.