WE'VE GOT YOUR BACK!
ACMCRN has your back-- and burning feet-- two main areas where Arachnoiditis usually hits. Our Collaborative Research Network was created in 2017 in order to bring light to this rare disease and a voice to those who suffer with it.
Celebrate Courage, Raise Awareness: Join Us for Rare Disease Day
Join us in commemorating Rare Disease Day on our dedicated page, where we unite in support of those affected by rare conditions. Discover inspiring patient stories, including Emmalyn's brave journey, access invaluable resources for treatment and research, and learn how you can contribute through our fundraising merchandise. Together, we're part of a global effort to raise awareness and drive advancements in rare disease care. Visit our Rare Disease Day page to learn more.
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.