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.
Social Media Toolkit
Looking for a way to help spread awareness about Arachnoiditis? Check out our Social Media Toolkit where you will find custom made graphics that you can share widely on your social media channels.
Be sure to check back often as new graphics are added on a regular basis.
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.
FACES OF ARACHNOIDITIS
I was once very active. I used to mountain bike and road bike often and trail run 6 or 7 miles, two to three times a week. Was often in the gym working out to keep my fit looking figure. I tried a lot of active maintenance because I'm a software engineer and spend my whole day at work sitting at a computer.
Then one day I woke up in the hospital with a broken mind and a broken body. I had been hit head on by an ATV while mountain biking. Smashed my spine, broke all my ribs, and suffered severe brain shearing which caused bad amnesia. I could not remember much of my life. This was also just when COVID hot, so not only was I new and different, but so was the whole world.
Take Our Survey
Over one thousand Arachnoiditis patients have taken our Stuff That Works (and doesn't work) survey. This is your chance to share your experiences with Arachnoiditis so that we can hopefully find treatment options tailored for Arachnoiditis.
In this survey, you will be asked a series of questions about your experience with Arachnoiditis which includes treatments, triggers, symptoms, medical history, comorbidities, and more. You will also be able to talk with other people with Arachnoiditis and view the knowledge base.
New to Arachnoiditis and wanting to know where to start? Visit our Starting Point where you will find protocols to help you get started from the Three-Component Protocol to the Emergency Starting Protocol, and more.