))
Alpha 1 Atrypsijn Deficiency With Mr,. Ohh From Ohio
Manage episode 468577325 series 3485028
In this episode of Rare Connection, I sit down with Chris, aka Mr. Ohh, who shares his journey of living with AATD, undergoing weekly infusions, and facing the challenges of this condition—all while using humor as his greatest weapon. We dive into what it’s like to navigate daily life with AATD, the lung-liver connection, and how laughter helps him push through even the toughest days.
📢 Don’t forget to SUBSCRIBE!
🔴 Watch more episodes & rare disease stories on Rare Chef: [Insert Channel Link]
🎙 Listen to the Rare Connection Podcast: [Insert Podcast Link]
💬 Let’s Connect!
📲 Send me a text message through the audio link in the YouTube show notes or, if you're listening on the audio side, use the "Send Me a Text" link in the show notes—I’d love to hear your thoughts!
💙 Support the Show
If you’d like to help keep this conversation going, you can donate through the “Support the Show” link in the show notes. Please note that contributions are not tax-deductible as I’m still working toward 501(c)(3) status. Your support means the world!
⚠️ Mental Health Resources
If you or someone you know is struggling, please know that help is available. You are not alone.
📞 Call or text 988 for the Suicide & Crisis Lifeline (U.S.)
#RareDisease #Alpha1AntitrypsinDeficiency #AATD #RareConnection #RareChef #ChronicIllness #LungHealth #LiverHealth #Emphysema #Podcast
Chapter Markers
00:00 Intro
03:54 diagnosis story
07:50 why it takes so long to diagnose
08:51 Alpha 1 explained
12:31 How a bad lund day affect Mr. Ohh's daily life
13:36 Mr. Ohh Sideways View
14:19 Weekly Infusions
20:37 Things Mr. Ohh used to take for granted that he is extra caregul about now
21:45 Misconceptions about Alpha 1
24:39 Why humor is so important
26:10 a time when laughter helped Mr. Ohh through a tough time
28:06 How Mr.Ohh handles it when people don't understand his humor
29:44 MR.ohh's diet
31:38 cooking hobby
32:55 Guidelines for managing lung inflamation
33:39 Lifestyle changes besides diet
35:36 A Typical day of eating
38:05 chsnging diet because of medication side effects
39:49 hydration
41:18 What medical professionals should know
43:09 What you should know
45:10 How you can supprt the Alpja 1 community
47:46 conclusion
Chapters
1. Alpha 1 Atrypsijn Deficiency With Mr,. Ohh From Ohio (00:00:00)
2. [Ad] & so much more (00:33:09)
3. (Cont.) Alpha 1 Atrypsijn Deficiency With Mr,. Ohh From Ohio (00:33:59)
62 episodes
Share
