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The holidays are a kaleidoscope of twinkling lights, festive feasts, and joyous gatherings. But for those living with Arachnoiditis, the season's magic can come with a bittersweet sting. Chronic pain, fatigue, and sensory sensitivities can turn even the simplest celebrations into daunting hills to climb. Yet, despair not, Arachnoiditis warriors! With a little planning and a dash of holiday spirit, you can navigate the season's merry maze with grace and resilience. Here are some tips to help: Pace Yourself: Your energy is precious, so guard it like a coveted gift. Prioritize outings and activities that bring you joy and avoid the pressure to "do it all." Delegate, say no without guilt, and embrace cozy nights in with loved ones. Mind the Menu: Holiday feasts are delicious but can be inflammatory for Arachnoiditis patients. Plan your meals with sensitivity in mind, opting for smaller portions, familiar ingredients, and gentle spices. Pack your own snacks and drinks for gatherings to ensure your comfort. Sensory Savvy: Crowds, flashing lights, and loud music can overwhelm. Choose quieter settings, bring noise-canceling headphones, and limit exposure to potential triggers. Remember, your health is the ultimate party favor. Prioritize Comfort: Dress for the occasion, but prioritize comfort above all else. Opt for loose-fitting outfits that won't irritate your skin or constrict your movements. Cozy blankets and supportive cushions can be your holiday heroes. Embrace the Virtual: Technology can be your bridge to holiday cheer. Connect with loved ones through video calls, share virtual gifts, and participate in online festivities. Remember, distance doesn't diminish love, and virtual celebrations can be just as meaningful. Most importantly, be kind to yourself. This season is about joy and connection, not performance. Celebrate your victories, big and small, and remember that rest is a form of self-care. Now, as you weave your way through the holiday whirlwind, remember that your journey is not solitary. The Arachnoiditis & Chronic Meningitis Collaborative Research Network (ACMCRN) stands beside you, fighting for better treatments and a brighter future. This holiday season, consider spreading your wings and supporting ACMCRN's vital work. A donation, no matter how big or small, can fuel research, empower patients, and bring hope to those navigating this challenging condition. Visit https://www.acmcrn.org/donate let your generosity be the light that guides others through the darkness of Arachnoiditis. Together, we can make this holiday season, and every season to come, a celebration of strength, resilience, and the unwavering spirit of the Arachnoiditis community. Remember, even with limitations, your holiday joy can shine brightly. So, put on your metaphorical angel wings, spread kindness, and let the spirit of the season guide you through. Happy holidays, Arachnoiditis warriors!

While Ehlers-Danlos Syndrome (EDS) and Chronic Regional Pain Syndrome are separate conditions from #Arachnoiditis, we know that there seems to be a correlation between all three. Many people with Arachnoiditis also have diagnoses or symptoms of these 2 other diseases. This is an interesting review of EDS and CRPS and #chronicpain that you might find informative. Click below to be taken to the article from PNN.

Have you learned about the different breathing methods for decreasing stress and pain? Researchers sought to determine if breathing techniques are effective in reducing pain, and how they stacked up against mindfulness techniques. Prolonged "sighing ", used intentionally as a treatment technique, appears to be the best. Seem too simple to really help? Our sympathetic system, which responds to stress with increased muscle tension, increased heart rate etc absolutely does affect our pain levels. Slowing the sympathetic system by inducing the parasympathetic system is why rhythmic breathing exercises work. The autonomic system,which is in charge of our daily autonomic system (heart rate, blood pressure, stomach emptying etc), is under the control of the parasympathetic system, until the sympathetic system initiates fight or flight (stress) responses. Reducing stress thus reduces pain. Breathing exercises can be very effective when used everyday. #stress #breathing #painmanagement #tools Breathing exercises for stress https://www.nhs.uk/mental-health/self-help/guides-tools-and-activities/breathing-exercises-for-stress/ Brief structured respiration practices enhance mood and reduce physiological arousal https://www.cell.com/cell-reports-medicine/fulltext/S2666-3791(22)00474-8?_returnURL=https://linkinghub.elsevier.com/retrieve/pii/S2666379122004748%3Fshowall%3Dtrue

There is little awareness about Spontaneous intracranial hypotension (SIH) caused by #CSF leaks. Spontaneous intracranial hypotension (SIH) is a debilitating and often invisible medical condition resulting from a spontaneous spinal cerebrospinal fluid (CSF) leak. CSF is a clear fluid that surrounds and protects the brain and the spinal cord, and cushions it from injury or damage. A CSF leak stems from a tear or abnormality in the dura, the fibrous tissue that covers CSF circulating around the brain and the spinal cord. The most common symptom is postional headaches which are headaches that improve when laying down, other signs and symptoms are: head pressure, a feeling of a grabbing sensation in the back of the head, extreme fatigue, nausea and vomiting; neck stiffness or pain, brain fogginess– feeling disconnected, photophobia, phonophobia etc. Under-diagnosis and/or misdiagnosis of a spinal CSF leak/ SIH is extremely common, resulting in little or no treatment for some patients suffering from it. Spinal CSF leaks can exist without any evidence of a leak on imaging, so it can be difficult to get a proper diagnosis and requires a specialist to assess and investigate the symptoms which is crucial. A negative MRI of the brain or spine does not rule out a spinal CSF leak. This brochure covers prognosis, treatment options, symptoms, causes, diagnosis and more. #educate #CSFleak #SIH #leak #headaches

This is a great article that explains magnesium and #methylation which is important because it's the body's most important nutrient. One of the ways magnesium exerts such a powerful role in so many facets of overall health is due to its role in methylation. I'm a poor methylator due to a MTHFR gene mutation, so I have to pay particular attention to magnesium. This article explains the differences between the different types of magnesium which I often get asked questions about. Magnesium is essential in controlling the #musclespasms most of us contend with. This article explains the various types of #magnesium. Please take a few moments and read this article so you can learn how magnesium can help control those muscle spasms and calm the nervous system Magnesium and Methylation – From Heart to Brain Health: What is the best form for you? - MTHFR Support Australia

Dr. Tennant's latest bulletin on Adrenal glands and how chronic intractable pain and inflammation can cause them to become depleted and what you can do about it. https://arachnoiditishope.com/wp-content/uploads/2023/01/Bulletin-112-Adrenal-Suplements.pdf

#arachnoiditis are not associated. The findings of the study suggest that in fact, as a whole, #MRI and clinical findings in lumbar arachnoiditis do not associate. There are a few positive associations which are significant, but these represent the exception not the rule. Clinicians caring for lumbar arachnoiditis patients should make management decisions based on their clinical history and exam, and not based on the severity of the disorder as viewed on imaging." #research #educate #teach #teachingtools https://www.sciencedirect.com/science/article/pii/S0303846720300603?fbclid=IwAR3wdzNgoUh14jTjmnClU3sw2dIipzLTf_AR32Jm9ELfGkGtrL8CiUWJytg

Dear Members, The long awaited monthly newsletter has been finally released. For those of you who have not signed up for our mailing list, here's the link to the newletter https://mailchi.mp/87a246a0f381/acmcrn-monthly-newsletter-january-of-2023 If you'd like to signup to receive our newsletter by email, sign-up using our subscribe form at the bottom of any page on the website, including this one.

Perspective: Lumbar adhesive arachnoiditis (AA)/ Chronic AA (CAA) are clinical diagnoses that do not require radiographic confirmation #MRI #research #educate #spotlight

I've been diagnosed with Dysautonomia and suffer from several of the symptoms, including recently adrenaline Dysautonomia. I thought this might be interesting for everyone to read, especially those of us with dysautonomia. Adrenaline Dysautonomia: Could You Have This Little-Known Condition? (drlamcoaching.com) #adrenaline #ans #dysautonomia #cns

Everyone with AA needs to know about dysautonomia. #Dysautonomia is the medical term for when the autonomic nervous system (ANS) does not work as it should. Since Arachnoiditis can affect the autonomic nervous system (ANS) and cause dysautonomia. Dysautonomia causes a wide variety of symptoms including; temperature dysregulation (such as sweating); dizziness, vertigo, and fainting; fast, slow, or irregular heartbeat; low blood pressure; problems with the gastrointestinal system; nausea, disturbances in the visual field; weakness, anxiety, and more. https://www.medicalnewstoday.com/articles/76785 #dysautonomia #ANS #autonomic #dysfunction #CNS #coldfeet #hot #cold #intolerance #temperature #sweating #dysregulation

Our "#Arachnoiditis Rare" team won number 1 place this season in the Game of Thrones (GO) slots games app. I've been creating Arachnoiditis or Rare Disease "teams" or guilds in Google Play games. In the group description I provide our acmcrn.org website and a bit of information on Arachnoiditis where there is enough room. You can find similar groups in Google Games Royal Match ("RareDiseaseArach"), Star Trek (Rare) and others. We do this to increase #arachnoiditisawareness, and for the fun of it! Some people with Rare Diseases play in our guilds, while others choose to join to show support. Why not join us! Join our team, or create a guild or team of your own using "Rare" or "Arachnoiditis " in the name. Then play together and win to show off our stuff! Just add our website in the description www.acmcrn.org

This is something that most of us deal with because of Arachnoiditis and this article explains why this happens. Learn about the autonomic nervous system and how it can affect your circulatory system and temperature regulation, as well as methods you can use to help manage cold feet. https://www.flintrehab.com/cold-feet-spinal-cord-injury/ #autonomic #dysregulation #coldfeet #SCI #research

While there are currently no FDA treatments for Arachnoiditis, patients do have some treatment options to consider. Supplements and hormones can be used to help inflammation and chronic pain. Excellent article attached. https://www.practicalpainmanagement.com/treatments/hormone-therapy/hormone-testing-replacement-pain-patients-made-simple Hopefully this knowledge will assist you and your doctors in battling the pain and inflammation.

This is Dr. Tennant's latest bulletin on exercises to encourage spinal fluid flow in those with adhesive arachnoiditis

Read Dr. Tennant's latest bulletin on the benefit of Ketorolac also known as Toradol. Please note: Dr. Tennant incorrectly refers to Ketorolac as "K". Since Ketamine is commonly referred to as "K", I've asked that this be changed, so please disregard this in the bulletin.

Dr. Tennant's newest bulletin #84 on a blood test detects and measures the amounts of specific molecules that cause inflammation called cytokines. You can find this file on our Dr. Tennant section of our website.

Dear members, For this month's blog I'm going to talk about what to do when you're newly diagnosed with Arachnoiditis. Whether it's an old case or new case, we have some great information for you that I believe will be very helpful in guiding you in the steps you need to take to get Arachnoiditis under control. The first thing I want to share is the Three-Component Medical Treatment by Dr. Tennant. As the name implies, there are three components to this protocol. The first component is controlling the neuro-inflammation (inflammation inside the spinal canal) which is important to control the progression. The second component is tissue regeneration, and the last part of the protocol is controlling the pain. Here's the Three-Component Medical Treatment bulletin. As you can see, there are several choices for both prescription and supplements for each category. Many of us have a hard time getting prescribed the necessary medications because our doctors are hesitant to prescribe corticosteroids and NSAIDS as a first line of defense or because of the side effects. Plus there are those who are unable to take them for medical reasons. If this is you, I believe it's important that you start on the supplements, along with other measures such as diet and exercise. Dr. Tennant, who developed the protocol, recommends that you try at least one or more medications from each category. Keep in mind finding the right protocol that works for you takes time and patience. What works for one person, doesn't always mean it will work for you. As far as supplements are concerned, you generally need to give them at least a month (or more) to work before making a decision on whether or not it's working for you. It personally took me two years to get my protocol down and I'm constantly reviewing it and adjusting it as my situation evolves. People often ask if you need to take the expensive brand names because they're concerned about the cost and they're like me on a fixed income. To those of you who are in the same boat as me, I don't believe that you should necessarily spend extra money on brand names. I feel it's better to just get started and buy what you can afford. I've found that physicians are more open to prescribing us some of the medications that Dr. Tennant recommends, such as Ketorolac or corticosteroids, when they're aware that we're trying to help ourselves. In addition to supplements and prescriptions, I feel it's important to eat an anti-inflammatory diet along with physical measures. These exercises are meant to encourage proper flow of CSF (cerebral spinal fluid) and electricity in your spine. Here's a great resource from Dr. Tennant for physical measures for prevention and treatment. I personally have found aquatherapy is a great option for us because of the buoyancy of the water. I use flotation devices such as belts and bars to help aid in exercising and to compensate for the weakened muscles and nerve damage in my legs. You don't need to swim or get carried away, you just need to do gentle movements starting out slowly and working your way up exercises that are for strengthening later on. Emergency Starting Protocol If you've been newly diagnosed it's essential that you get treatment within the first four months of the inciting procedure. This gives you the best hope to reverse the damage from Arachnoiditis. You can find the emergency protocol, along with the Three-Component Protocol and other useful information at our "Starting point" webpage. Good luck and have a low pain day, Eve

Dr. Tennant released his new book, "Clinical Diagnosis and Treatment of Adhesive Arachnoiditis, Handbook for Medical Practitioner" on Amazon. As the title implies, this is a handbook for medical practitioners. I know I've heard from many members that they wish there was a book specifically written for their physician, and this is it. Included in the handbook are symptoms profiles, laboratory tests, physical findings, and MRI abnormalities to identify and diagnose patients who have the disease. Treatment protocols are included. I can't wait to get my copy!

Neuroinflammation and Pain Welcome to ACMCRN's April 2022 monthly blog. This blog is about inflammation and the pain that arises from the inflammatory process. All pain regardless of its origin can be attributed to inflammation and the inflammatory response, whether it is sharp, dull, aching, burning, stabbing, numbing or tingling. For Arachnoiditis, controlling neuro-inflammation is key to controlling pain and preventing (or slowing) the progression. If the inflammatory response is uncontrolled or persists for an extended period of time, it can contribute to disease such as endocrine system fatigue and Intractable Pain Syndrome (IPS) The brain, spinal cord, and neurons make up the central nervous system and is protected by the blood brain barrier (BBB). The BBB protects the pristine environment of the spinal cord from potentially toxic substances in the blood. In order to control neuro-inflammation, medications and supplements must cross the blood brain barrier (BBB). In order to effectively treat Arachnoiditis, a three component protocol is necessary. The first component, and what this blog is mainly about, is treating neuro-inflammation. The second component is tissue regeneration, and lastly treating the pain. Inflammation and pain are related so I need to talk about both of them. However, I plan on doing a blog with the focus being on pain control agents in depth next month, including alternative methods. The main agent for controlling neuro-inflammation is non-steroidal anti-inflammatory or NSAID. There are four NSAID’s that cross the BBB most effectively; Toradol (ketorolac), indomethacin, diclofenac, and meloxicam. Unfortunately, most physicians are reluctant to prescribe certain anti-inflammatories. Since NSAID’s are so hard on the body, it’s understandable, but most of us can benefit from low doses administered one to three days a week. Dr. Tennant, a leading researcher on arachnoiditis and intractable pain, recently put out a Bulletin 83 – Administration of Four Consistent Agents for AA that you might find helpful. In addition to NSAIDS, supplements are a great way to help control neuro-inflammation. I've found the challenge is finding the right supplement and the right dosage. This is a time consuming process. It can take months to see the full effect of a supplement, but generally a month or two will give you an idea of its efficacy. It's taken me three years to find my own personal protocol, and even so, I'm still adding and removing supplements as my condition evolves. Please check out our Starting Point page to learn more about getting started on own protocol. The next subject is intractable pain syndrome (IPS). Fortunately for us, Dr. Tennant did extensive research on IPS and has some great chronicles on IPS at his website. The main point of his research is that when chronic intractable pain (24/7) pain is left uncontrolled it will eventually deplete your endocrine system and damage the neurotransmitter-receptors that normally work to control pain. This is where supporting your body's natural ability to control pain with supplements becomes important and to effectively control the neuro-inflammation and pain. Here are some important bulletins to learn more about IPS and what supplements help repair the neurotransmitter-receptors. Chronicle 69 – IPS Update 2021: Part 1 – transformation and definition https://arachnoiditishope.com/wp-content/uploads/2022/01/Chronicle-69-IPS-Update-2021.pdf Chronicle 70 – IPS Update 2021: Part 2 – recognition of IPS https://arachnoiditishope.com/wp-content/uploads/2022/01/Chronicle-70-IPS-Update-2021-Part-2-Recognition-of-IPS-1.pdf Chronicle 71 – IIPS Update 2021: Part 3 – necessity of diagnostic testing https://arachnoiditishope.com/wp-content/uploads/2022/01/Chronicle-71-IPS-2021-Update-Part-3-Necessity-of-Diagnositic-Testing.pdf Chronicle 72 – IPS Update 2021: Part 4 – coping with opioid restrictions https://arachnoiditishope.com/wp-content/uploads/2022/01/Chronicle-72-IPS-2021-Update-Part-4-Coping-with-Opioid-and-Benzodiazapine-Restrictions-IPS-Update-2021.pdf Chronicle 73 – IPS Update 2021: Part 5 – opioid surrogates and potentiators https://arachnoiditishope.com/wp-content/uploads/2022/01/Chronicle-73-Intractable-Pain-Syndrome-2021-Update-Opioid-Surrogates-and-Potentiators.pdf Flare-Ups Most of us with Arachnoiditis have experienced what we call a flare-up and I’ve been asked what that is many times over the years. A flare-up is when you experience an increase in neurological symptoms such as burning stabbing, shooting pain or other neurological symptoms. In addition, you might experience increased difficulty walking, weakness, bowel/bladder dysfunction, joint pain, or jerks and tremors plus a general feeling of fatigue and difficulty concentrating. This is what we commonly refer to as a "flare up" and getting this under control is paramount to healing. During these times it’s best to take a look at your endocrine system which is profoundly affected by IPS. It’s recommended that you get a blood test to check levels for hormones, inflammatory markers, glucose, and cholesterol. Inflammatory Markers blood test should include: ESR, CRP, cytokines. Hormone tests should include cortisol, DHEA, pregnenolone, testosterone. It should be noted that hormone levels peak in the morning and decrease during the day. The lowest levels are in the evening, which explains why so many of us have more pain at night. The hormone levels are restored at night while we sleep. So many of us have issues sleeping due to the pain and that’s why it’s essential that you do everything that you can do to get to sleep. I personally have an arsenal of things. I use both prescription (sparingly) and nonprescription sleeping pills, Benadryl, melatonin, ashwagandha powder, and teas such as chamomile and lavender. I personally don’t have any luck with marijuana, but many people do. Here are some great resources: Dr. Tennant's bulletin on the recommended blood tests: https://www.acmcrn.org/_files/ugd/5a5fb2_93b0252d4fd648669a39f24113d02ff9.pdf Chronicle 79 Critical Necessity to Maintain Hormone Blood Levels Chronicle 98 IPS Depletes Cortisol Adrenal Storage Reserve To summarize this blog, you need to be proactive and patient with this whole process. Take the time to do your #research and to #educate yourself. I understand that all of this can be overwhelming and we're here to help you along the way. Please feel free to ask questions or make a comment. Be sure to visit our website and look at the information we have on treating neuro-inflammation and pain. From your fellow #arachnoiditiswarrior, Eve Blackburn Are you interested in learning more about the subjects I discussed? Here are some of the resources I used to write this blog and other website’s of interest. IPS Chronicles Full collection of IPS Chronicles: https://arachnoiditishope.com/treatments/ Websites To take a deep dive into arachnoiditis and how this all works I suggest you read this article. This is also a fantastic article to print and bring to your physicians. Adhesive Arachnoiditis: A Clinical Update (practicalpainmanagement.com) Want to learn more about glial cells and how they work, here's the article for you What Are Glial Cells and What Do They Do? (verywellhealth.com) https://www.practicalpainmanagement.com/pain/spine/arachnoiditis-diagnosis-treatment Neuroinflammation: The Devil is in the Details https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5025335/ Learn more about cortisol levels and inflammation: https://www.rxlist.com/script/main/art.asp?articlekey=198552 Excellent article on inflammation, including diets: https://my.clevelandclinic.org/health/symptoms/21660-inflammation#:~:text=Your%20immune%20system%20sends%20out,%2C%20swelling%2C%20bruising%20or%20redness. Mediterranean Diet (great for inflammation) Mediterranean Diet (clevelandclinic.org) Article reference The biochemical origin of pain: the origin of all pain is inflammation and the inflammatory response: https://pubmed.ncbi.nlm.nih.gov/17728071/#:~:text=Irrespective%20of%20the%20characteristic%20of,inflammation%20and%20the%20inflammatory%20response

Dr. Tennant's latest bulletin on the causes of adhesive arachnoiditis and the conditions that preceded AA. Dr. Tennant explains that very few conditions are the source of inflammation that causes both the spinal cord lining and the nerve roots to become inflamed and stick (adhesions) together. I'm this bulletin he outlines the most common autoimmune-collagen conditions reported by the patients in his research study. Those of us with adhesive arachnoiditis will more than likely recognize one or more of these conditions.

This bulletin has the low dose safe and effective alternative doses for ketorolac and methylprednisolone that physicians are reticent to prescribe in higher doses. In addition, he gives you the dosage for low dose naltrexone (LDN) and human chorionic gonadotropin (HCG).

One week ago today, the Arachnoiditis Community lost another member to Arachnoiditis, and heaven gained another angel. Karen's family has asked that donations be made to ACMCRN in Karen's name. Although Karen was relatively new to our community, her loss will be profoundly felt by all. So please take a moment to visit her memorial page and make a donation in her name and if you can't afford to donate money, please take a moment to sign the guestbook and show her family and friends how much our Arachnoiditis community loves their own. You can find the guestbook on her memorial page or right here.

Dr. Tennant's bulletin on EBV and the possible connection between it and Arachnoiditis. ACMCRN is currently doing a literature review on this.

How collagen diseases cause Arachnoiditis and the three related categories plays a role; genetic; autoimmune/collagen; post-infection autoimmunity, lyme and Epstein Barr Virus (EPV) #drtennantsbulletins #drtennant #collagen

Informative bulletin on collagen and how at least 50% of patient MRI's reviewed by Dr. Tennant with arachnoiditis shows collagen related diseases. #drtennantbulletins #bulletins #collagen #heds #arachnoiditis

This is a great bulletin that describes what neuropathic pain is and what's effective at treating it. Be sure to check out Dr. Tennant's page on our website. #drtennantbulletins #drtennant #chronicpain #pain #ips #gaba #neuropathy #arachnoiditis #neuropathy

https://neurosciencenews.com/ai-robotics-sci-20147/https://neurosciencenews.com/ai-robotics-sci-20147/

There is a certain quality about the experience of living with a Rare Disease: a bit of an oxymoron in its character. By definition, a Rare Disease patient is one whose disease is found in less than 200 000 Americans (or about 1 in 1500) at any time. For those in Europe, the definition is similar at 1 in 2000 people, https://www.rarediseaseday.org/article/what-is-a-rare-disease. For those of us with any one specific disease entity, indeed we are a rare bunch. The spinal cord disease that we deal with, Arachnoiditis/ Adhesive Arachnoiditis, falls under this definition. Paradoxically, when Rare Disease patients are gathered together, we are actually not that rare at all! An estimated 350 million people globally are diagnosed with one of the over 6000 known types of Rare Disease. For a list of all types recognized in EU, see https://rarediseases.org/for-patients-and-families/information-resources/rare-disease-information/. So, while each disease entity has its own unique symptoms, causes, treatments and such, the overall experience and challenges of living with a Rare Disease are similar. If you are interested in learning more, see our #RareDiseaseDay 2022 presentation on our YouTube channel https://youtu.be/1mQPkvQKNv4 Those of us with Rare Disease have a whole lot of things in common! Long Delays in Diagnosis: The average length between symptom onset and proper diagnosis is 4.8 years! Patients see an average of 7.3 physicians before accurate diagnosis is made. (https://www.shire.com/-/media/shire/shireglobal/shirecom/pdffiles/patient/shire-diagnosis-initiative-pag-leaflet.pdf) Dealing with Stigma of Physician Disbelief: Many physicians, with their limited training and exposure to Rare Disease, become frustrated in their search and begin to openly express disbelief in symptom reporting, often looking for mental health issues to explain what is a primarily physiologic/genetic disorder. Families and patients become discouraged, and physicians often become frustrated with damage to the patient-doctor relationship. "....the absence of proof is not the proof of absence." Physician education, training, research, industry challenges: because very little is known about each of these rare diseases, each of these entities have only a handful of trained experts in the world. And even for those experts, the paucity of clinical research, evidence-based protocols and other such issues challenges their ability to provide any treatments or suggestions for these patients. Most of our care is made up of trial and error. Because there are so few experts in any one of these rare diseases, patients and their families must travel long distances at great expense to get care. Research into incidence, mechanisms, treatments and so on iis difficult due to geographical constraints and scattering of patients worldwide: Up until just a few short years ago, research opportunities were very limited for rare diseases. But recent technological advances in big data, social media, biometrics and more have made it possible now to overcome some of the past obstacles. Bio Registries, online patient advocacy groups, video conferencing, big data advances are beginning to overcome the financial and logistical challenges to Rare Disease Research in the past. Rare barometer* is an interesting project by EURORDIS, capturing the experiences of those who live with rare diseases through suveys and other project tools in an attempt to capture the experiences and opinions of people like us. Our recent Rare Disease Day presentation included some of their findings as it relates to the experiences of having a rare disease and accessing healthcare. You can see the slides in our presentation here; https://youtu.be/1mQPkvQKNv4 But some will say, and are likely correct, that Arachnoiditis is not truly rare. Fact is, until we do the studies to determine incidence and prevalence, we won't know. But one confounding factor is that so few are diagnosed, even when their images (usually MRI with contrast) obviously include images of Arachnoiditis; either clumped nerves or empty sac (no visible nerves) on axial MRI, thickened and misshapen nerve roots and CSF dilation on sagittal views. Yet a recent study* indicated that 3 out of 5 radiologists were unable to diagnose Arachnoiditis, with only 2 in 5, the most senior radiologists providing the correct diagnosis. Given that 60% of radiologists in that study missed Arachnoiditis, it would seem that it may be rare mostly because it's rarely diagnosed. What can we do, then? We can go far by sticking together as one community; by creating the opportunities for clinical research, fundraising for studies and participating in our community - led research. We can support each other in patient groups and peer support meetings. We can all throw ourselves into educating our healthcare providers, sharing resources available for educating yourself and sharing our professional resources with your doctors. Finally, we can raise awareness in creative ways. Do you play online games? Create a team called Arachnoiditis Rare Disease, and in the description link our website and add a few words about supporting Arachnoiditis patients worldwide. Or perhaps you have a med school close to you; send the Department of Medicine or its Library a copy of our Educational professional resources, including the latest Tennant Foundation book on reading MRIs for Arachnoiditis. Hold fundraisers and ask for donations to Arachnoiditis Research rather than receive gifts. Join our newsletter, participate in our research survey; the opportunities are endless. Together we are many! Together we are strong! In the spirit of Rare Disease Awareness month, Lori © Lori Verton ACMCRN March 2022.

Welcome to the ACMCRN Blog. Here you will find the latest updates and information related to Arachnoiditis. Each month, Lori Verton will be writing an article for our blog. In addition, we will be looking at other ways to use this space as a patient forum, so stay tuned!