EPISODE · May 14, 2025 · 1H 36M
Neuromyoitis Optica with Nicki From New York
from Rare Connection · host Joanna
Send us Fan MailIn 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.💡 New! Listener Quiz Stick around to test your knowledge with a short quiz at the end of the episode! It's a great way to stay engaged, especially with our new premium content rolling out soon on Apple Podcasts.📺 Watch & Subscribe This episode is available on YouTube at Rare Chef, Joanna’s advocacy and cooking channel. All content will now be posted here instead of TikTok Live, as live streaming has been paused due to age verification delays.📲 Follow Joanna OnlineYouTube: Rare Chef (subscribe for full episodes & Shorts)TikTok: @joannaball1 (Shorts only; no livestreams)Facebook: Joanna BallLinkedIn: Joanna Ball or Rare Connection Inc.X (Twitter): Rare Connection Inc.👕 Support the Show Through Merch! Get a shirt from our Bonfire shop under Rare Chef—with designs for Rare Connection, Rare Chef, and invisible illness awareness. Proceeds help fund groceries for Joanna’s cooking videos and keep the channel going.🎧 Premium Episodes Some episodes may appear as premium audio on Apple Podcasts for $3, but older episodes will remain free. Your support keeps rare stories heard.💬 Want to help?Use the Support the Show link in the audio show notesComment on the YouTube video to keep the conversation going⚠️ Disclaimer: All content is for educational and awareness purposes only. Always consult a qualified medical professional for health decisions. Please do not offer medical advice in the comments—even if you're a healthcare professional.🧠 Suicide Prevention ResourcesCall or text 988Text HOME to 741741 (Crisis Text Line)Chapter Markers00:00 Intro01:56 Early Signs04:22 Loss of mobiliy08:20 Nicki becomes bedbound09:20 Plasma Pheresis0:11:28 Neuromyolitis Optica VS Multiple Sclerosis0:13:29 Nicki otfrts her medical records0:15:03 Nick has had Asthma her entire Life00:16:17 Dysplasia0:18:57 Debicks Disease ( another name for NMO)0:19:39 Nicki looks for community0:21:22 MS Drugs can make NMO worse0:22:53 You can have NMO and not have the antibody0:23:33 The Sumaira Foundation (TSF) nonprofit for NMO0:24:45 Advocacy0:33:03 Vision on a daily basis0:37:00 Heat triggers symptoms0:39:55 Stztistics NMO0:42:13 genetics0:44:00 Lingering symptoms0:48:00 Treatments that help Nicki stay Relapse free0:50:16 Self care0:59:42 Turning points1:01:46 boumdaries1:04:56 Getting involved with the Simari foundation1:07:06 managing the ambassador program for The Sumaira Foundation1:08:46 comferences1:10:10 Travel for care1:12:30 favoriye projects with the Sumaira Foundation1:15:21 What you should know1:17:46 Srarting treatment for MS filters antibodies out1:18:42 myths and Misconceptions1:19:10 difference between the 2 tests for NMO1:20:10 coping during difficult times1:22:46 acceptance1:24:31 diet1:26:33 Advice for newly diagnosed1:27:42 What NMO has taught Nicki1:29:09 Conclusion1:33:15 nmo quizSupport the show
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Send us Fan Mail 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. 💡 New! Listener Quiz Stick around to test your knowledge with a short quiz at the end of the episode! I...
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Neuromyoitis Optica with Nicki From New York
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