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Ask the Expert 908. Talking With Your Child About a Difficult Diagnosis Jul 26, 2021

Show notes

SRNA hosted an Ask the Expert podcast, a special edition in collaboration with CDC, entitled "Talking With Your Child About a Difficult Diagnosis." We were joined by pediatric neuropsychologist Dr. Lana Harder. Dr. Harder discussed strategies for talking to your child about the diagnostic tests that are used at the onset of a rare neuroimmune disorder and how they may be invasive or painful. She explained transition of care as a child grows older and closer to adulthood and how to ensure your child is able to ask questions pertaining to their medical care. Dr. Harder talked about discussing concepts such as disability and adaptive activities with your child and what the future might hold for someone with one of these disorders. Finally, Dr. Harder discussed the emotions children might experience as part of this diagnosis and navigating your own emotions as a parent while talking with your child about their disorder.

ABCs of NMOSD 206. History, Diagnosis, and Management of NMOSD Jul 21, 2021

Show notes

Dr. Brian Weinshenker joined GG deFiebre of SRNA and Jacinta Behne of The Guthy-Jackson Charitable Foundation for an ABCs of NMOSD podcast titled, "History, Diagnosis, and Management of NMOSD." Dr. Weinshenker began with a history of NMOSD and how the aquaporin-4 antibody was discovered as a biomarker for NMO. He discussed other diagnoses that were historically used before NMOSD was coined, and he discussed the differences between how NMOSD is understood today since Dr. Devic's first understanding of the disease. Dr. Weinshenker talked about how a diagnosis of NMOSD is made, including the clinical makeup and diagnostic tests used. Finally, Dr. Weinshenker explained the acute and long-term treatments used and symptom management for NMOSD.

Ask the Expert 907. Transverse Myelitis | Diagnosis and Treatment Guidelines Jun 22, 2021

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SRNA hosted an Ask the Expert podcast entitled, "Transverse Myelitis: Diagnosis and Treatment Guidelines" with medical experts Dr. Ram Narayan and Dr. Elena Grebenciucova. The experts began by explaining what transverse myelitis is, signs and symptoms, and how the diagnosis is made. They discussed acute treatments and how they decide which treatments to use for each patient. Finally, the experts talked about rehabilitation and what someone should do if they experience decompensation.

ABCs of NMOSD 205. MOGAD and NMOSD: Is MOGAD Part of NMOSD or a Distinct Diagnosis? Jun 16, 2021

Show notes

GG deFiebre of SRNA is joined by Dr. Eoin Flanagan for an ABCs of NMOSD podcast on "MOGAD and NMOSD – Is MOGAD Part of NMOSD or a Distinct Diagnosis?" Dr. Flanagan outlines the similarities and differences between MOG antibody disease (MOGAD) and neuromyelitis optica spectrum disorder (NMOSD.) He discusses the different treatments for each disorder and how they are distinguished from multiple sclerosis. Dr. Flanagan talks about the history of these disorders and why it is important to differentiate them. Finally, Dr. Flanagan describes how people diagnosed with MOGAD and NMOSD can receive medical care and what they can expect for the future.

Ask the Expert 906. The Role of CDC and Public Health in AFM Surveillance | Part II May 31, 2021

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SRNA hosted an Ask the Expert podcast, in collaboration with Centers for Disease Control and Prevention, on "CDC and the Role of Public Health in Acute Flaccid Myelitis (AFM), Part 2." We were joined by Dr. Janell Routh of CDC, Dr. Ben Greenberg of UT Southwestern Medical Center, and Emily Spence Davizon of the Colorado Department of Public Health and Environment. The experts discuss whether an outbreak of AFM cases is expected in 2021, along with the potential causes of AFM, and how an outbreak is defined. They talk about what they are doing to prepare for possible new cases of AFM and why preventing new cases is difficult. The experts explain the importance of surveillance and research in improving outcomes for future children that are diagnosed with AFM, including the importance of ICD 10 codes. Finally, the experts discuss the distinction between the surveillance definition and the diagnostic criteria for AFM and how these criteria evolve over time.

Ask the Expert 905. The Role of CDC and Public Health Agencies in AFM Surveillance | Part I May 20, 2021

Show notes

SRNA hosted an Ask the Expert podcast, in collaboration with Centers for Disease Control and Prevention, on "CDC and the Role of Public Health in Acute Flaccid Myelitis (AFM)." We were joined by Dr. Janell Routh of CDC, Dr. Ben Greenberg of UT Southwestern Medical Center, and Emily Spence Davizon of the Colorado Department of Public Health and Environment. The experts discuss the process of how AFM cases are diagnosed, reported to public health agencies, sent to CDC, and classified. They describe the role of each organization/agency in reporting a case and the stages each case goes through. The experts define important terms such as surveillance, nationally notifiable, and mandatory reporting. Finally, the experts reiterate the importance of reporting cases for public health purposes, the need for clinicians to be aware of reporting, and the ways in which the case definition of AFM has evolved since 2014.

ABCs of NMOSD 204. COVID-19 and NMOSD May 14, 2021

Show notes

For this ABCs of NMOSD podcast, "COVID-19 and NMOSD," GG deFiebre of SRNA is joined by Dr. Michael Levy from Harvard Medical Center and Massachusetts General Hospital. Dr. Levy begins by explaining the risk associated with COVID-19 for someone diagnosed with NMOSD, and how medications such as rituximab may impact them. He discusses the current COVID-19 vaccines available and what people with NMOSD should know about receiving one. He talks about the protocol for relapses that occur during the pandemic and the first line treatments that are used after an attack. Finally, he provides information on whether COVID-19 infection and COVID-19 vaccines have caused relapses or new cases of NMOSD, and he reveals the research that is currently being conducted on this subject.

Ask the Expert 904. Behavioral and Psychological Changes in Demyelinating Conditions | Part 2 Apr 21, 2021

Show notes

SRNA hosted this Ask the Expert Podcast on "Behavioral and Psychological Changes in Demyelinating Conditions, Part 2" with experts Dr. Cindy Wang, Dr. Alison Wilkinson-Smith, and Densie Maddox, RN, BSN, MSCN. The experts provide information on what kinds of psychological and behavioral changes may occur in people with rare neuroimmune disorders and other demyelinating conditions. They explain how psychology and psychiatry play a role in developing treatment plans and which treatments are most effective. Helping children with these disorders succeed in school environments is discussed. Finally, the experts talk about ways in which adults and children with these disorders can advocate for their care.

Ask the Expert 903. My child has just been diagnosed with AFM. What do I need to know? Mar 16, 2021

Show notes

Dr. Sarah Hopkins and Sarah Stoney, MSW, LSW joined SRNA’s Rebecca Whitney for this Ask the Expert podcast, in collaboration with Centers for Disease Control (CDC). The topic is, “My child was just diagnosed with AFM. What do I need to know?” Dr. Hopkins begins by explaining the acute treatments typically administered after an AFM diagnosis and what families should expect during this time. She and Sarah Stoney discuss the importance of the care team in supporting the family during both the acute phase and long-term. Sarah Stoney describes the role of a social worker in helping with applying for insurance coverage, creating 504 plans for school, and many other supportive actions. Finally, the experts stress the role of child life specialists in helping a child and their siblings understand their diagnosis and participate in their care.

ABCs of NMOSD 203. NMOSD Stories: Ireland Mar 03, 2021

Show notes

GG deFiebre of SRNA is joined by Ireland Thomas, a member of SRNA and person diagnosed with NMOSD. Ireland begins by describing her initial symptoms when she was six years old and her journey to getting an NMOSD diagnosis. She talks about the treatments she received and her experience as a child within the medical system. Ireland discusses how NMOSD impacts her life, including ongoing symptoms, her personal identity, and the transition from childhood to being an adult living with this disorder. She touches on her fears and her hopes for the future. Finally, Ireland talks about how she explains NMOSD to others in her life.

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