Member Spotlight: Syringomyelia Arnold Chiari Association
Brain Awareness Week 2024
During Brain Awareness Week 2024, we will be highlighting some of our fantastic member organisations.
Today we are highlighting the Syringomyelia Arnold Chiari Association
What are Chiari Malformations?
Chiari Malformations (CM) are complex neurological conditions where the cerebellar tonsils in the base of the brain, descend through an opening in the skull, into the area at the top of the spinal canal. The tonsillar descent in CM can affect the flow of the cerebrospinal fluid (CSF) and in some cases may compress the brain stem.
The two most common types of a Chiari Malformation are -
Chiari 1 (CM1) and Chiari 2 (CM2), we are also seeing patients diagnosed with Chiari 0 and Chiari 1.5.
In most cases, CM1 are congenital, related to a small posterior fossa (the space in the skull that holds the cerebellum).
CM2 is associated with the conditions Spina Bifida and Hydrocephalus, caused by abnormalities in the structure of the brain and spine before birth.
Chiari can also be acquired.
In these cases, Chiari can be caused by a buildup of pressure in the brain eg as a result of a tumour, by a problem with the spinal cord known as a tethered cord, by leakage of CSF or by an injury.
Chiari Types 3 and 4 are very rare severe embryonic conditions.
Who are Syringomyelia Arnold Chiari Association?
Syringomyelia Arnold Chiari Association (SACA) is a small, registered charity run by volunteers, based in Northern Ireland.
We have 50+ full members and a moderated closed Facebook group with 140+ members.
SACA provides information and support to those living with Chiari Malformations, Syringomyelia and associated conditions.
We aim to:
Remove the isolation families face when they receive a diagnosis
Support more people who are impacted by these conditions
Educate health care professionals.
What support does the Syringomyelia Arnold Chiari Association offer?
SACA operates a helpline, and provides virtual support. We produce a members’ newsletter, arrange face to face meet ups and social events. All of our Trustees have direct experience of these conditions.
How can people contact the Syringomyelia Arnold Chiari Association?
Email: info@saca.org.uk
Helpline: 078 26 004 008