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Show Notes: Episode 2.09 - The Conversation With a Patient Advocate Continues

Updated: Jun 14

Original Air Date: May 15, 2024


We're back this week with Part 2 of our interview with Megan Karanfil to dive deeper into her role as a patient advocate, how advocates can help, and why they're so important to patients, especially "complex" ones like those of us with EDS, neurodivergence, and other co-morbidities.


Co-Hosts: Luna and Shelli


Special Guest: Megan Karanfil, BCPA

Megan is a patient and professional that has a passion for helping Zebras. Her business, The Herd's Nerd, provides advocacy and consulting services to patients who need help with a variety of issues that patients experience. She is also on the EDS consortium and authors materials such as journal articles to help in the treatment of EDS and comorbid conditions and has has spoken at several of the Society conferences. She runs several groups on facebook including a local EDS group for the Maryland, DC and Virginia area. Her goal is for you to know you are not alone and deserve support, no one should have to go through this by themselves.

Find Megan on Facebook, Instagram, and TikTok


Important Takeaways:

  • Patient Advocates can offer a range of benefits for patients (especially complex patients), including providing patient information and education, speaking with physicians, accompanying to medical appointments, and so much more.

  • Advocates are bound by strict ethical standards.

  • Advocates can help ensure that your rights are upheld in different settings.

  • Advocates can help suggest accommodations tailored to your specific needs for work or school.


Links to Resources and Topics Mentioned In This Episode


Drugs, Medications, Treatments


Advocate Information

Patient Advocate Certification Board - https://www.pacboard.org

Greater National Advocates - https://gnanow.org/advocates/


EPISODE TIMESTAMPS

00:00 - Episode Introduction by Shelli

02:04 - Process of Elimination

06:40 - Megan's Mast Cell Connection

09:35 - Lesser Known Treatments

13:15 - How Patient Advocates Help

15:05 - Doctor's Responses to Advocates

18:15 - Why EDS Patient Advocates Are Needed

19:45 - Advocate Red Flags

21:30 - Advocate's Boundaries with Patients & Expectations

23:45 - Ways Advocates Provide Support

25:45 - Accommodations For Work/School

28:55 - Fighting for your Rights


Thank you so much for joining us this week. If you haven't already, please remember to work your magic (Like, Follow, Share, Subscribe, leave a Review) on whichever platform you're joining us on; it truly helps more people find us and it's an easy (and free!) way to help support the podcast.


You can now also support the show by making a one-time donation here, or a monthly contribution through Spotify! Simply go to our show's Spotify page and click "Support This Podcast". Your support will help us reach our goals to improve our recording quality and make other improvements to the podcast.


Every bit helps, and we appreciate your support, follows, ratings, and shares so much! Thank you, Bendy Baddies!


Our thanks again to our wonderful guest, Megan Karanfil, for taking time to speak with us and giving us some inside information about the world of patient advocacy.


Be sure to listen in next week, when we will have our first ever panel interview! Join Luna and Shelli as they discuss Ehlers-Danlos Syndrome with an often underrepresented part of our Zebra community: men! Our special Zebra Guests for the men's panel will be Doug (@dougkremer on Youtube), Bryan Jewell (@KindaSpoony on TikTok), & Brandon (@susanpossibly on TikTok).



Wishing you happy, healthy hypermobility!


-Tiffany | Assistant Producer

Feel free to email to me with any questions!













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