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SRNA
United States
Registrace 23. 12. 2007
The Siegel Rare Neuroimmune Association (SRNA) is a not-for-profit international foundation dedicated to the support of children, adolescents, and adults with a spectrum of rare neuroimmune disorders including: ADEM, AFM, MOG-Ab disease, NMOSD, ON, and TM.
We support individuals living with rare neuroimmune diagnoses and their families, promote awareness to empower patients, families, clinicians and scientists, build a collaborative and dedicated clinical care network and help advance scientific understanding and research.
We support individuals living with rare neuroimmune diagnoses and their families, promote awareness to empower patients, families, clinicians and scientists, build a collaborative and dedicated clinical care network and help advance scientific understanding and research.
The Power of Community: Becca
Becca's relentless pursuit of answers led to her diagnosis of MOG Antibody Disease in 2016, before the test for this condition became widely available. Her story is one of perseverance and the quest for knowledge in the face of uncertainty. Becca’s journey illustrates the importance of research, advocacy, and the collective strength of our community.
zhlédnutí: 31
Video
2024 TM Together | Community Q&A
zhlédnutí 67Před 7 hodinami
During the 2024 TM Together online event, Krissy Dilger of SRNA was joined by Dr. Paula Barreras of Cedars-Sinai Medical Center and Dr. Hamza Coban of University of Connecticut Health Center. Dr. Barreras and Dr. Coban answered questions from the audience about transverse myelitis (TM), managing relapsing TM, diagnostic tests, and medications [00:07:15]. The doctors also delved into symptom man...
The Power of Community: Alan
zhlédnutí 53Před 16 hodinami
Alan's diagnosis of vascular myelopathy in 2020 introduced him to a world of challenges similar to those faced by others with rare neuroimmune disorders. Although his condition is different, Alan found a welcoming and supportive community within SRNA. His story is a beautiful example of our community’s inclusive spirit, offering support to all who face similar struggles, regardless of their dia...
The Power of Community: Ashley
zhlédnutí 123Před 14 dny
Ashley was diagnosed with acute disseminated encephalomyelitis (ADEM) in 2007 when she was in college. Her journey has been marked by resilience and the relentless pursuit of better health, demonstrating the powerful impact of determination and support within the SRNA community. Ashley's story is a testament to the power of community and the difference it can make in the lives of those impacted...
The Power Of Community: Teaser
zhlédnutí 33Před 14 dny
As we reflect on the past 30 years, we recognize that SRNA is where we are today because of the incredible power of our community. The journeys of Ashley, Francisco, Amber, Becca, Abby, and Alan highlight the resilience, strength, and togetherness that define who we are. These stories are a celebration of the community that has shaped SRNA and helped us grow.
1212. The Role of Physicians and Patients in Legislative Advocacy
zhlédnutí 40Před 14 dny
In this episode of "Ask the Expert," hosted by Krissy Dilger of SRNA, Dr. Shuvro Roy talked about the importance of legislative advocacy in healthcare [00:01:10]. Dr. Roy discussed how physicians can engage in legislative advocacy by sharing their practice stories and providing technical expertise [00:05:05]. He emphasized the crucial role of patients in advocacy, highlighting that their person...
502. Men and NMOSD
zhlédnutí 53Před 14 dny
In this episode of "ABCs of NMOSD," Landy Thomas of SRNA hosted a discussion about the experiences of men who are living with neuromyelitis optica spectrum disorder (NMOSD). Doug Kirby and Andrew Jopson shared their diagnosis journeys, highlighting the physical and emotional challenges they faced [00:04:20]. They delved into the impact of the disorder on their personal lives, careers, and relat...
The Power of Community: Francisco
zhlédnutí 104Před 21 dnem
Francisco was just three years old when he was diagnosed with acute flaccid myelitis (AFM) in 2016. His journey highlights the challenges faced by young children diagnosed with these conditions and their families, and the profound impact of early diagnosis and community support. Francisco's courage and the strength of his family exemplify the heart of our community.
1211. Community Spotlight | Kim Harrison
zhlédnutí 58Před 21 dnem
In this episode of "Ask the Expert, Community Spotlight Edition," Lydia Dubose of SRNA spoke with Kim Harrison about her journey with transverse myelitis (TM), adaptive sports, and challenges she has faced since her diagnosis [00:01:25]. Kim highlighted the importance of community support systems in her life [00:11:38]. She discussed managing symptoms, navigating social situations, and raising ...
1210. Community Spotlight | Paula Jones
zhlédnutí 97Před měsícem
In this "Ask the Expert, Community Spotlight" episode, Krissy Dilger of SRNA was joined by Paula Jones, a filmmaker from New Zealand, who discussed her journey with transverse myelitis and how it has impacted her life and career [00:01:34]. She shared her diagnosis story, detailing the sudden onset of symptoms and the challenges she faced during and after her hospital stay [00:02:26]. Paula tal...
The Power of Community: Abby
Abby was initially diagnosed with transverse myelitis in 2006 and later re-diagnosed with acute flaccid myelitis in 2019. Her journey highlights the evolving nature of diagnosis and the enduring spirit required to face such challenges.
The Power of Community: Amber
Amber's life took an unexpected turn when she was diagnosed with neuromyelitis optica spectrum disorder (NMOSD) in 2012. At 30, she faced numerous challenges but remained steadfast in her determination to understand and manage her condition. Amber’s journey reflects her courage and the essential role of community in providing support and hope during difficult times.
2024 ADEM Together | Community Q&A
zhlédnutí 101Před 2 měsíci
During the 2024 ADEM Together online event, Krissy Dilger of SRNA was joined by Dr. Cindy Wang of University of Texas Southwestern Medical Center. Dr. Wang provided a comprehensive overview of acute disseminated encephalomyelitis (ADEM) diagnosis and symptoms [00:00:50]. She addressed long-term effects, emphasizing the importance of short-term response to treatment and potential complications [...
1209. What is ULTOMIRIS?
zhlédnutí 157Před 2 měsíci
Dr. Michael Levy joined Dr. GG deFiebre of SRNA for the “Ask the Expert” podcast episode titled "What is ULTOMIRIS?" Dr. Levy explained that ravulizumab (ULTOMIRIS) is the newest FDA-approved medication for neuromyelitis optica spectrum disorder (NMOSD), offering a longer dosing interval compared to eculizumab (Soliris) [00:01:08]. Dr. Levy discussed the mechanism of ULTOMIRIS, which blocks the...
2024 MOGAD Together | Community Q&A
zhlédnutí 261Před 3 měsíci
During the 2024 MOGAD Together online event, Dr. GG deFiebre of SRNA was joined by Dr. Elias Sotirchos of Johns Hopkins Hospital in Baltimore, Maryland. Dr. Sotirchos answered the audience’s questions about myelin oligodendrocyte glycoprotein antibody disease (MOGAD) symptoms, diagnosis [00:00:05], and treatment options such as IVIG and subcutaneous IG [00:02:18]. Dr. Sotirchos emphasized the v...
1208. MOGcast | Understanding Cortical Encephalitis
zhlédnutí 186Před 3 měsíci
1208. MOGcast | Understanding Cortical Encephalitis
1207. MOGcast | The Latest in Treatments from an Adult and Pediatric Perspective
zhlédnutí 413Před 3 měsíci
1207. MOGcast | The Latest in Treatments from an Adult and Pediatric Perspective
1206. Voices of SRNA Volunteers | Part 2
zhlédnutí 54Před 4 měsíci
1206. Voices of SRNA Volunteers | Part 2
2024 Stronger Together | Raising Funds for Rare
zhlédnutí 21Před 4 měsíci
2024 Stronger Together | Raising Funds for Rare
2024 Stronger Together | Quality of Life Family Camp Information Session
zhlédnutí 19Před 4 měsíci
2024 Stronger Together | Quality of Life Family Camp Information Session
2024 Stronger Together | Creative Connections: 30-Word Stories
zhlédnutí 52Před 4 měsíci
2024 Stronger Together | Creative Connections: 30-Word Stories
2024 Stronger Together | Founders' Perspectives: A Conversation with SRNA Leaders
zhlédnutí 53Před 4 měsíci
2024 Stronger Together | Founders' Perspectives: A Conversation with SRNA Leaders
2024 Stronger Together | Journey Together: Reflecting and Shaping the Future
zhlédnutí 68Před 4 měsíci
2024 Stronger Together | Journey Together: Reflecting and Shaping the Future
1205. Voices of SRNA Volunteers | Part 1
zhlédnutí 80Před 4 měsíci
1205. Voices of SRNA Volunteers | Part 1
1204. Community Spotlight | Ilona Williams
zhlédnutí 56Před 5 měsíci
1204. Community Spotlight | Ilona Williams
1203. Community Spotlight | Rick Telander
zhlédnutí 150Před 5 měsíci
1203. Community Spotlight | Rick Telander
501. Transitioning from Pediatric to Adult Care with NMOSD
zhlédnutí 76Před 5 měsíci
501. Transitioning from Pediatric to Adult Care with NMOSD
I've had constant, severe pain from TM since June 2004. You're an inspiration
I've had constant severe pain from TM for two decades. You're an inspiration.
What a inspirational young lady!
ما شاء الله حقاً الشرح يستحق الشكر والتقدير . God bless you . اكتب من فانكوفر كندا 🙏
Oh my goodness what a brave and lovely man. I hope more is done to help his condition.
Thank you for the kind words!
Is there an MS Teaching hospital?
Hello, there are many MS teaching hospitals. Please let us know if there is a specific area you're looking for a teaching hospital in, or email us at info@wearesrna.org with any questions.
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Phenomenal interview
How do I get a copy of the flow chart please, I looked on the web sie?
Hello, unfortunately, we no longer have access to the slides for this presentation. You can find recent presentations from our Rare Neuroimmune Disorders Symposium here: wearesrna.org/living-with-myelitis/resources/resource-library/?fwp_type_of_resource=symposium.
Beautiful story ! Thanks to Francisco and his family for sharing their journey we us, Thanks to SRNA for all the wonderful work for 30 years! Gracias !
Thank you, Jesus!
I guess when I hear these talks I feel jealous as 8 years in and I still have never met anyone else with TM . I did not receive any family support and was away from home and was staying with my mum who had dementia in Ireland. Still trying to get back to my home in NY
Hello, we're so sorry to hear about your diagnosis, and that you did not have family support. You can find resources on our website, including online support groups and a one-on-one Peer Connect program: wearesrna.org/. If you're not already a member of SRNA, you can join here: wearesrna.org/join/. Membership is completely free and allows you to stay informed on the latest news, programs, research, and events.
My brother has multiple slcrosis and a brain sugurey soon and im scared, if u care ill keep this comment updated
I have had TM for over 10 years. I am on Gabapentin and worry what's it's doing to my brain. I was on 12 a day but managed to reduce it to 8 a day.
Hello, we're sorry to hear about your diagnosis. If you aren't a member already, we encourage you to join SRNA. Membership is free and allows you to stay up to date on the latest news, research, information, and events. You can join here: wearesrna.org/join.
I would love to talk to someone about my symptoms.
Hello, please email us at info@wearesrna.org, and we will try to connect you with resources and professionals who may be able to answer your questions.
I have mogad. Not on any treatments. Woke up one day and couldn’t walk. Was placed on a low dosage of prednisone when I first tested positive. I feel horrible 24-7. Now my eyes are getting really bad and my brain feels really weird. My arms and legs feel numb. I have had several mris with negative results optic nerves/ brain, spinal cord. I’ve seen two separate neurologists where I live without any help I feel like. Is this how my life is going to be moving forward?
Hello, we're so sorry to hear about your diagnosis. You may be able to find care in your area using our Medical Professional Network: wearesrna.org/living-with-myelitis/medical-professional-network/. If there are not providers listed near you, we recommend seeing neurologists who specialize in multiple sclerosis (MS). There are long-term treatments that can help prevent relapses in MOGAD. You can learn more about them in this video: wearesrna.org/resources/the-latest-in-treatments-in-mogad-from-an-adult-and-pediatric-perspective/. Finally, if you are not a member of SRNA, please consider joining here: wearesrna.org/join/. Membership is completely free and allows you to stay up to date on the latest research, information, events, and news.
@@wearesrna thank you for the information I will definitely be using this.
Core body temperature raises half a degree celsius and it causes all your MS symptoms to hit at once tenfold!! And even cause new symptoms!! Which aren't really knew they just weren't severe enough to notice!! 🤪💪
Thank you for this information, my hubby got effected by Anti mog, he took the steroids and injection of tocilizumba for 6 times, monthly period.. He got effected on his bladder, he has the numbness in the lower body , unable to manage stuffs.. so what will be the treatment for issue
Hello, we're so sorry to hear about your husband's diagnosis, we know how difficult this diagnosis can be. You can find a variety of resources on symptom management, including bladder and bowel dysfunction, in our Resource Library: wearesrna.org/living-with-myelitis/resources/resource-library/. If you are not already a member of SRNA, we encourage you to join here: wearesrna.org/join/. Membership is completely free and allows you to benefit from all of our resources and programs.
Demyelination and inflammation really stink. So does the pain associated.
Plz find treatment 😔 😟 im sufffrom 3 years only 19 years old plz 😢😢
Hello, we're sorry to hear about your diagnosis. Please consider becoming a member of SRNA. Membership is completely free and allows you to be connected to our education and support programs. You can join here: wearesrna.org/join/
Sir I'm suffering from transverse myelitis from 3 years sir no cure my hand finger are wery week they not work properly when i hear about me my frinds ane insulting so find permanet treatment for transnerve mylathies please im 19 years old only plz.....my mind is telling to sucide.pls sir help......😢😢😢😢❤
Hello, we're so sorry to hear about your diagnosis. You can find support resources on our website: wearesrna.org. Also, if you are experiencing suicidal thoughts, please call the National Suicide Hotline at 1-800-273-TALK (8255), or text Crisis Text Line by texting start to 741741. Please email us at info@wearesrna.org if you have any questions or would like to be directed to more resources.
If you have had optic neuritis with a relapse in one eye, can you get it in the other eye. So worried about this because even though my daughter was on mycophenolate she had a relapse in the same eye, now they have made her mycophenolate even stronger. Hopefully, it works even though it makes her really sick, I am just worried about her hood eye being attacked. In Brisbane Australia, there doesn't seem to be anyone to ask.
Hello, we asked Dr. Sotirchos your question, and here is his response: "MOGAD can affect areas of the central nervous system that were not previously affected (so an eye that has not been previously affected, or the spinal cord in someone who previously had optic neuritis). In your area, I recommend that you pursue an appointment with Dr. Broadley (experts.griffith.edu.au/19029-simon-broadley) who is an expert in MOGAD/NMOSD and is located close to you." If you have any additional questions, please feel free to contact us at info@wearesrna.org.
Thank you so much for answering ❤ Simon Broadly isn't taking any new patients, so I am increasingly concerned as they don't answer their phones or email. 😢
Wife has had had transverse myelitis for 14 yrs. Pain gotten worse over the years and all . Tried all meds Tramadol 300ER, Hydrocodine, gabapentin etc etc. Spinal cord stimulator didn't help . For past 2 years pain pump with Prialt ,Fentanyl and Clonidine. Hurts to walk and can't do much at all. Any ideas on new types of treatment ? Pain usually 6-8 with meds.
Hi, we're so sorry to hear about your wife's diagnosis and ongoing issues with pain. The latest information and resources for pain management can be found in our Resource Library here: wearesrna.org/living-with-myelitis/resources/resource-library/?fwp_topics=neuropathic-pain. We recommend this video from our 2023 Symposium: wearesrna.org/resources/neuropathic-pain-research/. Also, please feel free to contact us at info@wearesrna.org, and we will try to direct you to helpful information and resources.
Just seeing this. I took ill with diagnosis of TM idiopathic whilst in Europe though had lived in upstate NY . My Lyme disease test was negative. I am also wondering if I was tested with right kit.
Hello, we are so sorry to hear about your diagnosis. If you have any questions, please feel free to email us at info@wearesrna.org.
Thank you for the video! Could you please spell out the few options mentioned (around 22min) for the preventive treatments?
Hello, the treatments mentioned are: IVIG, CellCept, rituximab, tocilizumab, satralizumab, azathioprine, mycophenolate, and methotrexate. You can also toggle the "transcript" feature to show the full transcript of the podcast!
Se puede tener normalidad de los efiltres orina y anal. en pasiente supuesta mielitis. gracias
I am from Pakistan my 21 month old daughter, doctor diagnosis ADEM,sir please help me for best treatment.
Hello, we're so sorry to hear about your daughter's diagnosis. Please email us at info@wearesrna.org, and we will direct you to resources that may help answer your questions.
Thanks
My dad was labeled with ADEM, but I honestly don't think that's what it actually was. He woke up paralyzed from the waist down. The first MRI showed a lesion on the C4. His whole spinal cord was inflamed. They started a steroid and plasmapheresis. After 2 rounds of plasmapheresis, the 2nd MRI showed the inflammation moved up into the cerebellum. He did not make it. They never found out what caused the lesion. I don't know. A part of me wants better answers.
Hi Megan, we're so sorry for your loss. If you have any questions about ADEM, please feel free to contact us at info@wearesrna.org.
What a brave lady
Can neuroscardosis be cured fully? Newly diagnosed 😮
Hello, there is no known cure for neurosarcoidosis at this point in time. Here is a recent informational video on neurosarcoidosis: czcams.com/video/CKS42wKBXfM/video.htmlfeature=shared
That's a lie. But, thank you for saying something. This illness targets children ages 5 and 6, typically. And, onset is usually in Sept/Oct when children are going back to school. So. Show me what else we are doing differently to children ages 5 and 6 that could be causing this - other than "catching them up on their vaccines" (as my pediatrician joked about this). Thank you and have a nice day.
Hello, you can find more information about the causes of AFM on the info sheet here: srna.ngo/afm-info-sheet.
What is mog or maga
Hello, MOG stands for "Myelin Oligodendrocyte Glycoprotein". There is a disorder related to the MOG antibody, called MOG antibody disorder, or "MOGAD" for short. Some people with ADEM are also positive for MOG antibodies. You can learn more about MOGAD here: wearesrna.org/living-with-myelitis/disease-information/mog-antibody-disease/?swcfpc=1
Do not believe this is unique to MS.I have TM and this totally describes my fatigue.
I have NMOSD and my medication is steriod cortecosteriod ,i just want to ask if Can I stop taking steriod at 5mg?
Hello, unfortunately, we cannot answer this question, as it pertains to your individual medical care. We encourage you to consult with your neurologist, and to share any helpful resources from our website (wearesrna.org/) with them.
It means so much to find others with this disorder!
We are glad you found this video helpful! If you're not already a member of SRNA, please visit wearesrna.org/join. We share stories, hold support groups, have a peer connect program, and more. Membership is completely free.
That was very uplifting ❤
We are glad you found this video uplifting! If you're not already a member of SRNA, please visit wearesrna.org/join. We share stories, hold support groups, have a peer connect program, and more. Membership is completely free.
My 4 year baby girl mog positive adem 😢😢😢😢😢...scend times
Hello, please email us at info@wearesrna.org. We also encourage you to become a member of SRNA at wearesrna.org/join/. Membership is completely free and will allow you to stay up to date on the latest research, news, and events.
@@wearesrna iam a malayali .. speeking Malayalam.. kerala.disric......not under stand...pls help me my baby girl .., I'm so 😢😢😢😢😢😢😢😢😢😢 sad
@@nazimmuhammed-pg1in info@wearesrna.org enna vilaasathil njangalkku email cheyyuka, vivarangal kandethaan ningale sahaayikkan njangal paramaavadhi shramikkum.
Can you provide shelter for me in your centre
Hello, please email us at info@wearesrna.org.
CAR-T for Neuro Sarcoid?
Hello, thank you for your question. Please email us at info@wearesrna.org and we will try to provide you with resources to help answer your question.
My mom is currently having Mog her vision is 50 percent and her feets are having a burning sensation doctors are advising immuno suppresers what should i do plz reply
Hello, we're sorry to hear about your mom's diagnosis. Please email us at info@wearesrna.org, and we will try to direct you to resources that will help answer your questions.
14:30
So frustrated as total lack of support or even acknowledgement of TM compared to that for individuals with MS. I live in Northern Ireland. Only affirmation that I have any struggle since diagnosis is from SRNA and online talks
Hello, we're so sorry to hear about your diagnosis. We are glad you have found support through SRNA. If you would like any assistance locating resources or finding information, please feel free to email us at info@wearesrna.org. 🧡
What potassium supplement and dosage should it take.
Hello, please email us at info@wearesrna.org, and we will try to connect you with resources that will help answer your question.
Picture and outside?and inside vote out funding and services and business and IV bags and in hospital and but DR and MD and center and peace Gp the no matter powerful and no kill and for and cancer and can food and cancer and like can durking By law 💯 Bad Gp and milk 🥛
I went through the same journey! 2015-2016 How are you doing?
Hello, we're sorry to hear about your diagnosis. You can learn more about transverse myelitis on our website at wearesrna.org/.
This is extremely helpful because I am dealing with this right now and the first thing that happed is all of these test have been ordered like echocardiogram, artery Doppler tests and MRI but nothing about corticosteroids! Thousands of dollars for tests that may not be needed should not be the first course of action according to all my research.
My 7 year old son has been suffering from ADEM for 2 years. If it's hot outside, it's hot, it's 26 degrees up, my son has a fever of 40 degrees. Only cold compresses from the freezer applied to the liver help. I react the same way to IVIG or steroids. Is there any cure for this? Antipyretics don't work, and my son also avoids the sun. He hides in the shade or in a house with air conditioning all summer and when he goes outside he immediately comes back with a fever and very bad mood
@wearesrna please comment
Hello, we're so sorry to hear about your son's diagnosis. You can find more info about ADEM on our website at wearesrna.org. You can also join as a member of SRNA at wearesrna.org/join/?swcfpc=1. Membership is completely free and allows you to stay up to date on the latest research, events, news, and information.
informative, impressive presentation
Thank you so much for this discussion
Gabapentine is the worse, suicide drug, for making pain worse and killing your brain EVER. 1st it had "a study group" of 24 days, for epilepse......THATS ALL....now its a street drug in the UK. 2nd GBPentine is peenys to manufacture...at walmart...they have a gallon container of pills for 15.00 ...SERIOUSLY....its a $$$$$ to big Pharma.....Tramadol that the liver makes naturally is not addictive and they class it "1" drug, because it works for pain.... ask any one that has real pain.... Those on the board are ingenuous and are like all the other "MEDICAL Industries Schell practitioners".