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WHAT IS MOGAD?
MOG Antibody Disease (MOGAD) is a recently coined neuro-inflammatory condition that preferentially causes inflammation in the optic nerve but can also cause inflammation in the spinal cord and brain. Myelin oligodendrocyte glycoprotein (MOG) is a protein that is located on the surface of myelin sheaths in the central nervous system. 1,2 While the function of this glycoprotein is not exactly MOG ANTIBODY DISEASE (MOGAD) Loss of color vision. Paralysis (no motor function) of a limb or limbs. Paraparesis (weakness) of a limb or limbs. Loss of sensation. Loss of bladder or bowel control. Profound bladder retention. Seizures 4,9. Those with MOG Antibody Disease are more likely to have both optic nerves affected at the same time and if the symptoms are in onlyone
WHAT ARE RARE NEUROIMMUNE DISORDERS OF THE CNS? Rare neuroimmune disorders are immune-mediated disorders of the central nervous system (brain, spinal cord and optic nerves).The immune system is the body’s defense against foreign invaders, such as viruses and/or bacteria. Normally, the cells that are a part of the immune system have the ability to distinguish an infectious agent from a person’s body; however, sometimes some of these MOG ANTIBODY DISEASE (MOGAD) Initially, the presence of anti-MOG was thought to be associated with fewer relapses and better outcomes than those with AQP-4 positive NMOSD, 5,8 but studies with longer follow-up times indicate higher relapse rates than previously reported. 4,8 A cohort study from 2016 found that 80% of those in the cohort had a multiphasic disease and an annualized relapse rate (AAR) of 0.9. 4,13 They found TRANSVERSE MYELITIS (TM) TM can be the presenting feature of Multiple Sclerosis. In individuals with acute partial transverse myelitis and normal brain MRI, about 10-33 percent develop MS over a five to ten-year period. If the brain MRI shows lesions, the transition rate to clinically definite MS is known to be quite high, in the range of 80 to 90 percent within a few ARE THERE GUIDELINES FOR EXERCISING WHEN YOU HAVE TM Many of my patients tell me that they don’t exercise because, “they don’t know what exercises to do.” This is a curious problem. On the one hand not exercising is a safe solution, after all, if you don’t know what the proper exercise is then maybe you will be hurting yourself if you push yourself to exercise, especially if you have a chronic condition like transverse myelitis (TM). UNDERSTANDING PAIN IN TRANSVERSE MYELITIS One of the most common issues that patients afflicted with transverse myelitis experience is pain. It can come in many forms, but the most common is a burning or stabbing pain that occurs in an arm, leg or around the trunk. Read more about neuropathic pain in UNILATERAL PRIMARY CNS VASCULITIS IN A CHILD ASSOCIATED Unilateral Primary CNS Vasculitis in a Child Associated with Increased ICP and Treated with Maximal Medical Therapy and DecompressiveHemicraniectomy
THE SIEGEL RARE NEUROIMMUNE ASSOCIATION (SRNA)RARE NEUROIMMUNE DISORDERSACUTE DISSEMINATED ENCEPHALOMYELITISACUTE FLACCID MYELITIS We know you have many questions about COVID-19 coronavirus and rare neuroimmune disorders, which is why we’ve worked with our medical experts to bring you the latest information on treatments, care, and support. “Time is of the essence when it comes to rare neuroimmune disorders and the time to get awareness out is now. THE TRANSVERSE MYELITIS ASSOCIATION IS BECOMING SRNA The circle has no beginning or end. The circle protects. It offers safety. For us, the circle is a reminder of connection, community and inclusivity.A symbol of support and comfort.A symbol of progress.A symbol of hardship, endurance, and hope.The circle also resembles the three c’s of our tagline: connect. care. cure. That’s why we made the warm, earthy orange symbol our logo: it’s aWHAT IS MOGAD?
MOG Antibody Disease (MOGAD) is a recently coined neuro-inflammatory condition that preferentially causes inflammation in the optic nerve but can also cause inflammation in the spinal cord and brain. Myelin oligodendrocyte glycoprotein (MOG) is a protein that is located on the surface of myelin sheaths in the central nervous system. 1,2 While the function of this glycoprotein is not exactly MOG ANTIBODY DISEASE (MOGAD) Loss of color vision. Paralysis (no motor function) of a limb or limbs. Paraparesis (weakness) of a limb or limbs. Loss of sensation. Loss of bladder or bowel control. Profound bladder retention. Seizures 4,9. Those with MOG Antibody Disease are more likely to have both optic nerves affected at the same time and if the symptoms are in onlyone
WHAT ARE RARE NEUROIMMUNE DISORDERS OF THE CNS? Rare neuroimmune disorders are immune-mediated disorders of the central nervous system (brain, spinal cord and optic nerves).The immune system is the body’s defense against foreign invaders, such as viruses and/or bacteria. Normally, the cells that are a part of the immune system have the ability to distinguish an infectious agent from a person’s body; however, sometimes some of these MOG ANTIBODY DISEASE (MOGAD) Initially, the presence of anti-MOG was thought to be associated with fewer relapses and better outcomes than those with AQP-4 positive NMOSD, 5,8 but studies with longer follow-up times indicate higher relapse rates than previously reported. 4,8 A cohort study from 2016 found that 80% of those in the cohort had a multiphasic disease and an annualized relapse rate (AAR) of 0.9. 4,13 They found TRANSVERSE MYELITIS (TM) TM can be the presenting feature of Multiple Sclerosis. In individuals with acute partial transverse myelitis and normal brain MRI, about 10-33 percent develop MS over a five to ten-year period. If the brain MRI shows lesions, the transition rate to clinically definite MS is known to be quite high, in the range of 80 to 90 percent within a few ARE THERE GUIDELINES FOR EXERCISING WHEN YOU HAVE TM Many of my patients tell me that they don’t exercise because, “they don’t know what exercises to do.” This is a curious problem. On the one hand not exercising is a safe solution, after all, if you don’t know what the proper exercise is then maybe you will be hurting yourself if you push yourself to exercise, especially if you have a chronic condition like transverse myelitis (TM). UNDERSTANDING PAIN IN TRANSVERSE MYELITIS One of the most common issues that patients afflicted with transverse myelitis experience is pain. It can come in many forms, but the most common is a burning or stabbing pain that occurs in an arm, leg or around the trunk. Read more about neuropathic pain in UNILATERAL PRIMARY CNS VASCULITIS IN A CHILD ASSOCIATED Unilateral Primary CNS Vasculitis in a Child Associated with Increased ICP and Treated with Maximal Medical Therapy and DecompressiveHemicraniectomy
WELCOME! | SRNA
We are a patient advocacy group focused on supporting our over 14,000 members globally, individuals diagnosed with ADEM, AFM, MOGAD, NMOSD, ON, and TM, their families, caregivers and medical professionals specializing in these rare neuroimmune diseases. Stay informed about new treatments for those newly diagnosed with these rare neuroimmune WHAT ARE RARE NEUROIMMUNE DISORDERS OF THE CNS? Rare neuroimmune disorders are immune-mediated disorders of the central nervous system (brain, spinal cord and optic nerves).The immune system is the body’s defense against foreign invaders, such as viruses and/or bacteria. Normally, the cells that are a part of the immune system have the ability to distinguish an infectious agent from a person’s body; however, sometimes some of these MOG ANTIBODY DISEASE (MOGAD) Loss of color vision. Paralysis (no motor function) of a limb or limbs. Paraparesis (weakness) of a limb or limbs. Loss of sensation. Loss of bladder or bowel control. Profound bladder retention. Seizures 4,9. Those with MOG Antibody Disease are more likely to have both optic nerves affected at the same time and if the symptoms are in onlyone
TRANSVERSE MYELITIS (TM) Assessment and fitting for splints designed to passively maintain an optimal position for limbs that cannot be actively moved is an important part of the management at this stage. The long-term management of TM requires attention to a number of issues. These are the residual effects of any spinal cord injury, including TM. ACUTE FLACCID MYELITIS (AFM) The purpose of the treatments is to attempt to reduce inflammation in the spinal cord and further prevent the individual’s immune system from causing damage. IVIG has antibodies that may have effect on limiting inflammation or neutralization or replication of enteroviruses and is widely used in treating AFM. The data on use ofsteroids or
ARE THERE GUIDELINES FOR EXERCISING WHEN YOU HAVE TM Many of my patients tell me that they don’t exercise because, “they don’t know what exercises to do.” This is a curious problem. On the one hand not exercising is a safe solution, after all, if you don’t know what the proper exercise is then maybe you will be hurting yourself if you push yourself to exercise, especially if you have a chronic condition like transverse myelitis (TM). A STORY OF ADEM AND A NEW ILLNESS: MOG ANTIBODY DISEASE We felt what she was having was an even more rare version of her illness called multiphasic ADEM, or MDEM, which is a form of recurrent ADEM primarily caused by anti-MOG. We reached out to multiple hospitals and only Boston Children’s Hospital and Children’s Hospital of Philadelphia (CHOP) contacted us back. UPDATE ON UT SOUTHWESTERN Q CELL STEM CELL TRIAL IN The UT Southwestern Q Cell Stem Cell trial is included. Since the mandates to enact social distancing were put into effect, basic science labs and clinical trials were paused. Thus, we have been unable to proceed with our first surgery as planned. Based on the number of questions received, we wanted to provide this update to ourcommunity.
GENETIC MUTATION FOUND IN FAMILIAL TRANSVERSE MYELITIS Idiopathic transverse myelitis is an acute inflammatory attack of the spinal cord leading to weakness, sensory loss and bowel/bladder dysfunction. The prevalence is 0.1-0.2/100,000 and there are no known risk factors. Objective . To identify a genetic risk for development of idiopathic transverse myelitis. Methods . MEGAN BLAUFUSS, OTR/L, MS, CPAM Medical Professional Network. Megan Blaufuss, OTR/L, MS, CPAM. Occupational Therapist. Our Children's House. Children's Health. Dallas, Texas. United States. Disease Expertise: Acute Flaccid Myelitis, Spinal Stroke or AVM. Type of Medical Professional: Occupational Therapist (OT)* Youtube
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CORONAVIRUS (COVID-19) AND RARE NEUROIMMUNE DISORDERS We know you have many questions about the coronavirus (COVID-19) and rare neuroimmune disorders, which is why we’ve worked with our medical experts to bring you the latest information on treatments,care, and support.
> Read about coronavirus and rare neuroimmune disorders COVID-19 CORONAVIRUS AND RARE NEUROIMMUNE DISORDERS We know you have many questions about COVID-19 coronavirus and rare neuroimmune disorders, which is why we’ve worked with our medical experts to bring you the latest information on treatments, care, andsupport.
> Read about coronavirus and rare neuroimmune disorders COVID-19 CORONAVIRUS AND RARE NEUROIMMUNE DISORDERS We know you have many questions about COVID-19 coronavirus and rare neuroimmune disorders, which is why we’ve worked with our medical experts to bring you the latest information on treatments, care, andsupport.
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