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.
One thought on “G03.9 Adhesive Arachnoiditis in #RAREfest18 Film Festival”
Greetings from Australia, my name is Derek Morrison and have for the past 26 years researched chemically induced adhesive arachnoiditis caused by a too toxic contrast mediums (dye) used in diagnostic x-ray. Since 1926 chemical injection into the body have taken place, the first being lipiodol from France. It went out of vogue in 1946 due to causing adhesive Arachnoiditis.
In 1944 iophendylate came on the world market after being developed by University of Rochester and Eastman Kodak the FDA approval etc and how it was given marketing approval cannot be covered here but you can find detailed report on such development and consequences of such use on the links below, The name of this contrast medium with 19 proprietary names [brands] sold throughout the world until 1996. The major two known were pantopaque and Myodil which were the only contrast mediums used until 1978 worldwide, other than The Netherlands where they stated iophendylate was far too toxic for human use and used their own developed water base contrast mediums. Whilst today ESI are seen as the main cause of CIAA [chemically induced adhesive arachnoiditis] around the world they are no more or no less toxic just the latest of the use of too toxic chemical mix’s injected into the body. Here it’s impossible to cover all my research but please visit the following links to know more, please make contact if you so wish
There are others, to assist if need be.
Medical Researcher [Australia]
Comments are closed.