Neuromyoitis Optica with Nicki From New York

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In this episode of Rare Connection, host Joanna Ball speaks with [Guest Name], who shares their powerful journey with [Rare Disease]. Together, they discuss diagnosis challenges, treatment paths, daily life, and advocacy work. Whether you're a patient, caregiver, medical professional, or just curious—this conversation brings rare insight into a rarely understood condition.

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Chapter Markers

00:00 Intro
01:56 Early Signs
04:22 Loss of mobiliy
08:20 Nicki becomes bedbound
09:20 Plasma Pheresis
0:11:28 Neuromyolitis Optica VS Multiple Sclerosis
0:13:29 Nicki otfrts her medical records
0:15:03 Nick has had Asthma her entire Life
00:16:17 Dysplasia
0:18:57 Debicks Disease ( another name for NMO)
0:19:39 Nicki looks for community
0:21:22 MS Drugs can make NMO worse
0:22:53 You can have NMO and not have the antibody
0:23:33 The Sumaira Foundation (TSF) nonprofit for NMO
0:24:45 Advocacy
0:33:03 Vision on a daily basis
0:37:00 Heat triggers symptoms
0:39:55 Stztistics NMO
0:42:13 genetics
0:44:00 Lingering symptoms
0:48:00 Treatments that help Nicki stay Relapse free
0:50:16 Self care
0:59:42 Turning points
1:01:46 boumdaries
1:04:56 Getting involved with the Simari foundation
1:07:06 managing the ambassador program for The Sumaira Foundation
1:08:46 comferences
1:10:10 Travel for care
1:12:30 favoriye projects with the Sumaira Foundation
1:15:21 What you should know
1:17:46 Srarting treatment for MS filters antibodies out
1:18:42 myths and Misconceptions
1:19:10 difference between the 2 tests for NMO
1:20:10 coping during difficult times
1:22:46 acceptance
1:24:31 diet
1:26:33 Advice for newly diagnosed
1:27:42 What NMO has taught Nicki
1:29:09 Conclusion
1:33:15 nmo quiz

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