International Patient Registry
Discover Our Arachnoiditis Patient Registry
Explore the power of collective knowledge and make your voice heard. Our Arachnoiditis Patient Registry is a vital resource for the community, contributing to improved care and research. Learn more about the registry and how you can join this important initiative by clicking below.
What is Arachnoiditis?
Arachnoiditis is initiated when there's an insult to the Arachnoid mater from either trauma, infection, or chemical irritation. When this happens, the body's normal response is to trigger special glial cells located in the nerves. These then migrate to the injured area and release cytokines as part of normal healing.
However, in those who are predisposed to Arachnoiditis, it also causes neuro-inflammation, that if left untreated, becomes swollen and inflamed, leading to the nerves becoming clumped and tethered together, which can progress to them adhering to the dura layer of the meninges, which is commonly called Adhesive Arachnoiditis (or scarring) and is the most severe form of Arachnoiditis.
For people living with a serious disease that's labeled as rare, this can be a real living nightmare. For the thousands, perhaps millions of people who have Arachnoiditis, we need to educate the public and the medical community on this serious public health threat.
WHO IS ACMCRN?
Arachnoiditis & Chronic Meningitis Collaborative Research Network (ACMCRN) serves patients, physicians, and researchers in the global Arachnoiditis community. By harnessing the power of social media, which allows patients and their families - 'Arachwarriors ' to collaborate across the globe, and employing the latest in rare disease research techniques, we hope to find the answers to this rarely studied condition. Through the power of community, (patients, families, physicians, and researchers), we aim to uncover answers that will lead to prevention, care and clinical treatment of this devastating disease.
If you're new to Arachnoiditis and looking for guidance on where to begin, our Starting Point webpage is a great resource to get you started. We provide a wealth of information on medical treatment options, including both prescription and non-prescription medications, alternative treatments, and medical devices. In addition, we offer peer support meetings and an emergency starting protocol to help you manage the condition. We also feature Dr. Tennant's three-component protocol, a comprehensive treatment approach designed to address the physical, psychological, and emotional aspects of living with Arachnoiditis. Visit our website to access all of these valuable resources and more.
FACES OF ARACHNOIDITIS
We are deeply saddened to announce the passing of Joseph David, a beloved member of our community who courageously battled arachnoiditis. Joseph's remarkable journey has left an everlasting impact on our hearts and minds.
As we remember Joseph's life and the challenges he faced, we invite you to visit his Faces of Arachnoiditis page on our website. This special tribute, titled "Joseph David: A Remarkable Journey," allows us to celebrate his strength, share his story, and honor his memory.
Please take a moment to visit Joseph's page at [insert link to Joseph's page]. There, you will find a heartfelt account of his experiences, his unwavering spirit, and his commitment to raising awareness about arachnoiditis.
Through this tribute, we aim to shine a light on the realities of arachnoiditis and unite in support of those affected by this condition. Joseph's story serves as a reminder of the resilience within our community and the importance of fostering understanding and empathy.
We extend our deepest condolences to Joseph's family and loved ones. May his memory inspire us to continue our collective efforts in raising awareness, promoting research, and providing support to individuals battling arachnoiditis.
In honor of Joseph David's legacy