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.
Store Now Open!
Welcome to our new ACMCRN fundraising store! Help spread awareness with this custom made to order Arachnoiditis merchandise.
Choose from unisex short sleeve t-shirts, long sleeve t-shirts, hoodies, coffee mugs, totes, and stickers with more coming soon.
All proceeds from this fundraising merchandise go to our non-profit organization which supports our important research efforts, as well as educational, advocacy and peer support priorities.
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.
EMERGENCY PROTOCOL
New to Arachnoiditis and want to know where to begin? Visit our Starting Point webpage where you will find lots of helpful information to get you started, including medical treatment options, using both prescription and non-prescription medications, alternative treatments, medical devices, peer support meetings, emergency starting protocol, and Dr. Tennant's three-component protocol.
FACES OF ARACHNOIDITIS
Allan Schwartz's story of enduring a rare spinal cord disease - as told in his new book, Called to Persevere: One man's journey to overcome pain, disease and disappointment with God - is both captivating and life changing.
Arachnoiditis has caused him to be confined to a wheelchair, as he no longer has full use of his legs.
Allan’s crippling pain began at age seventeen, and during the subsequent seventeen years, he endured 3 back surgeries, 6 epidurals, 7 spinal taps, several nerve blocks, and the implantation of a spinal cord stimulator. He has also undergone dozens of unsuccessful treatment plans such as hyperbaric treatment and IVIG (intravenous
immunoglobulin) infusions. At age 20, he ventured to Germany for treatment. That treatment led to his ability to be out of the wheelchair, standing tall and walking!
Unfortunately, just when he thought his miracle had finally come, tragedy struck just a short six months later - his arachnoiditis came back with a vengeance.
