Adhesive Arachnoiditis (AA) is an incurable rare disease causing lifelong suffering and pain.
It is often misdiagnosed and is a poorly understood disease. Limited studies have been carried out historically and there is little active research at this time.
A great many patients are left facing a life of severe pain and disability, with little hope of help and support.
Delays in diagnosis, misdiagnosis and a lack of proper care cause avoidable distress and suffering, not only for patients but for all of the patient’s loved ones.
This situation has gone on for too long. We are calling for the medical field to work together to cover gaps in recognising rare diseases like AA and to both identify new and make available existing treatment options.
All patients and families affected by rare diseases need more support from the system; too often we are left to fight alone.