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ACMCRN Arachnoiditis Collaborative Research Network
Приєднався 20 січ 2021
Arachnoiditis Educational and Awareness videos. O
Curated playlists and original videos from ACMCRN
Arachnoiditis and Chronic Meningitis Collaborative Research Network
www.acmcrn.org
Instagram: arachnoiditisacmcrn
Twitter:@acmcrn
Contact: Eve Blackburn
VP Patient Engagement
ACMCRN contact@acmcrn.org
Curated playlists and original videos from ACMCRN
Arachnoiditis and Chronic Meningitis Collaborative Research Network
www.acmcrn.org
Instagram: arachnoiditisacmcrn
Twitter:@acmcrn
Contact: Eve Blackburn
VP Patient Engagement
ACMCRN contact@acmcrn.org
Arachnoiditis Awareness Month: Shine a Light on This Rare Disease
Welcome to Arachnoiditis Awareness Month. This July, we shine a light on a condition that affects thousands but remains largely unknown: Arachnoiditis. Arachnoiditis is a rare and debilitating disease initiated by trauma, infection, chemical irritation, or foreign substances in the spinal canal. Symptoms can include severe stinging and burning pain, muscle cramps, and dysfunction in bladder, bowel, and sexual functions.
ACMCRN leads the collaborative effort by uniting patients, caregivers, doctors, and researchers to advance research and education within the Arachnoiditis community. We focus on four strategic areas: Research, Strategic Collaborations, Awareness & Fundraising, and Patient Engagement.
This July, join us in raising awareness for Arachnoiditis. Share this video, educate others, and support those affected by this condition. Your donations and volunteer efforts can help fund crucial research and provide essential resources for those living with Arachnoiditis. Visit ACMCRN.ORG to learn more and donate.
ACMCRN leads the collaborative effort by uniting patients, caregivers, doctors, and researchers to advance research and education within the Arachnoiditis community. We focus on four strategic areas: Research, Strategic Collaborations, Awareness & Fundraising, and Patient Engagement.
This July, join us in raising awareness for Arachnoiditis. Share this video, educate others, and support those affected by this condition. Your donations and volunteer efforts can help fund crucial research and provide essential resources for those living with Arachnoiditis. Visit ACMCRN.ORG to learn more and donate.
Переглядів: 267
Відео
Unseen Struggles: The Reality of Rare Diseases
Переглядів 1828 місяців тому
"Unseen Struggles: The Reality of Rare Diseases" is a compelling 3-minute video presented on Rare Disease Day, highlighting the significant yet often overlooked challenges faced by individuals living with rare diseases. From prolonged diagnosis times and scarce treatment options to the high costs of medical care and feelings of isolation, this video sheds light on the harsh realities endured by...
Harnassing AI and machine-learning platforms in Rare Disease: Living with Arachnoiditis SOPATE 2023
Переглядів 30010 місяців тому
Presentation of ACMCRN study results at the SOPATE 2023 Conderence in Belgium 11/24. Presented by Dr Ishna Singh MD, CRA ACMCRN. Based upon data from 1250 participants with Arachnoiditis, the largest Arachnoiditis Patient-reported survey we have found to date. Survey was done using Stuffthatworks.health platform in 2020/2021.
ACMCRN International Patient Registry
Переглядів 499Рік тому
Introduction to our new International Arachnoiditis Patient Registry.
Patient Registry Coming July 15th
Переглядів 145Рік тому
Join us for a groundbreaking milestone as we proudly unveil the grand opening of our Patient Registry on July 15th! In this captivating video, we share the significance of this milestone and explain what a Patient Registry truly is. Be sure to visit our website at ACMCRN.org and sign up for our newsletter to get more details when it launches. A Patient Registry serves as a comprehensive and inv...
The Story of Emmalyn Freeze
Переглядів 52Рік тому
Emmalyn is a 13 (almost 14) year old girl who has had 51 brain and spinal cord surgeries and procedures. She has been diagnosed with Chiari Malformation, Syringomyelia, Ehlers Danlos Syndrome (EDS), Occult Tethered Cord, and Adhesive Arachnoiditis. Visit our website at www.acmcrn.org/emmalyn-freeze to learn more or to donate visit www.gofundme.com/f/helping-keep-emmalyn-strong
Arachnoiditis & Exercise.
Переглядів 3 тис.2 роки тому
Video short on the importance of exercise and Arachnoiditis, along with some tips. Keep an eye out for our next video in this series. Special thanks to TRINA WHITE for creating this video and providing to ACMCRN for our use. Copyright ACMCRN 2022 No reproduction or reuse without written permission by ACMCRN
Arachnoiditis short video about how long it takes to be diagnosed with a rare disease
Переглядів 2152 роки тому
Arachnoiditis video short Copyright ACMCRN 2022 No reproduction or reuse without written permission by ACMCRN
Arachnoiditis Causes Video Short
Переглядів 1,4 тис.2 роки тому
Second video in our series of short videos about Arachnoiditis
Adhesive Arachnoiditis symptoms
Переглядів 4,4 тис.2 роки тому
Third video in our series about Arachnoiditis
Arachnoiditis Video Short
Переглядів 9362 роки тому
First in a series of video shorts we will be releasing this year, 2022, about Arachnoiditis.
ACMCRN Rare Disease Day Presentation
Переглядів 2652 роки тому
This is a great video about rare diseases and how it relates to Arachnoiditis special for Rare Disease Day, February 28th
> hard lumps to form inside the spinal canal? 1) what are these lumps? Scar tissue? 2) can they be seen on imaging?
I have adhesive arachnoiditis no one gives a shit
The reality is you should have nobody cares day I have adhesive arachnoiditis I come from uk
Glad I been doing these all along except I see I need to start doing stretches especially with my spine. I've already had to have surgery last May for arachnoid cyst fenestration & spinal cord detethering on my thoracic level at T7. I been doing remarkable but I might have another cyst.
is it similar to Ms
Can it happen after a cervical fusion?
Yes. Arachnoiditis can occur at any segment and level. Cervical Arachnoiditis is less commonly understood and it may be difficult to get a diagnosis because it's not as readily seen on mri as lumbar. Most with the diagnosis have received it during a Cervical surgery where it can be visualized. However, using anti inflammatory diet, supplements and such can still help. Check out our suggested treat protocol at www.acmcrn.org
@@acmcrnarachnoiditiscollabo2335 Yes it can, at any level… even intracranially like me.
I take a biological Rinvog and Rasuvo and they help tremendously well.
I would be open to a trial to try biological medicine. I feel we have a biologic out there that can help us. Just wish there could be a trial for that
Yes, it has certainly been a suggestion for us to consider for future study. Our Research Team is currently creating our Research Strategy for the next few years and hopefully you will hear more about a timeline soon. Please sign up to our Registry so you will always get an invite to our studies!
I believe I have this. Adhesive arachnodidus. It is very disabling and painful. No one can diagnose me. Disc degeneration with fissures and spinal stenosis. Inflammation of course.
Same. Dr Forrest Tennant has some pretty good videos on the condition, plus he's the grandpa you didn't know you needed 😂
Another cause from years past was the oil-based dyes used in myleograms. My orthopedist performed a myleogram on me while I had a staph infection. I became so ill they weren't able to siphon the dye back out of me, and I later developed adhesive arachnoiditis. I was 15 at the time, and my Dr lost his license a couple of years later for drugs and alzheimers.
Exercising is difficult when one also has cerebral palsy
Totally
Could you please post some reference regarding the exercises? Thanks
This is simply genius and thoughtful of others to share. Thank you for your contribution by educating and I understand you bear no liability to the result of exercising because each person is different and should know their limitations. However, be hopeful that there is other ways to ameliorate oneself in this journey of pain and suffering.
Really great information! Thank you ACMCRN.
I have been diagnosed, but can’t find a doctor who understands it. Do you have any information of doctors who treat patients with Adhesive Arachnoiditis?
Yes! Please come to our website at www.acmcrn.org. You will find a physician list available there. It's in document form right now but we are busy building a searchable option available by year end, we hope.
You won't get a Dr to talk about it you are now the hospitals dirty we secret