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Rare Connection Episode 9: Malan Syndrome with sky from Oklahoma
Manage episode 422308338 series 3485028
Το περιεχόμενο παρέχεται από το Joanna. Όλο το περιεχόμενο podcast, συμπεριλαμβανομένων των επεισοδίων, των γραφικών και των περιγραφών podcast, μεταφορτώνεται και παρέχεται απευθείας από τον Joanna ή τον συνεργάτη της πλατφόρμας podcast. Εάν πιστεύετε ότι κάποιος χρησιμοποιεί το έργο σας που προστατεύεται από πνευματικά δικαιώματα χωρίς την άδειά σας, μπορείτε να ακολουθήσετε τη διαδικασία που περιγράφεται εδώ https://el.player.fm/legal.
Join me as I talk to Sky , mother of 3 children. about her daughter Presley's diagnosis with Malan Syndrome. Malan Syndrome is an overgrowth disorder that is considered as ultra rare. Their are only 300 cases of this condition world wide. Join me as I ask about her 8 year journey to diagnosis, Symptoms, Her role in Co-founding The Oklahoma Rare Coalition and the Malan Syndrome's Advocacy board which also deals with Arterial Tortuosity Syndrome (ATS). The impact that Malan Syndrome has had on her family, resources and More. You can visit the Malan Syndrome Foundation Website by going to https://www.malansyndrome.org/ If you would like to donate to this podcast you can go to https://www.buzzsprout.com/2204433/support Please consider subscribing to Rare Chef here on YouTube. Feel free to comment below.
Κεφάλαια
1. Rare Connection Episode 9: Malan Syndrome with sky from Oklahoma (00:00:00)
2. Malan Syndrome (00:05:05)
3. Presleys diagnosus with Malan Syndrome (00:06:45)
4. Sky Finds her community in the Malan Syndrome foundation (00:09:11)
5. Coping with Presley's diagnosis (00:10:07)
6. Cifounding the Oklahoma Rare Coalition (00:11:51)
7. Sky's Role on the board of Twist of Fate ATS (00:12:52)
8. Sky's role on the Psrent Asvisory board on the parent advisory board of the Malan Syndrome Foundation (00:13:51)
9. Support and resources (00:14:23)
10. organizational impact (00:15:23)
11. challenges as a rare parent advocate (00:16:25)
12. Hopes for the future (00:17:40)
13. Issues tat need to be addressed for Malan Syndrome (00:18:54)
14. support from the public for Malan Syndrome (00:19:58)
15. Advocacy (00:20:45)
16. Hopes for the future (00:21:50)
17. Advice to new parents (00:22:39)
18. changes in perspective since Presley's diagnosis (00:23:39)
19. closing remarks (00:24:46)
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