49 episodes
Not So Rare Podcast Taylor and Liz
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- Health & Fitness
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4.9 • 15 Ratings
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It is estimated that over 300 million people are affected globally by rare diseases. Although each rare disease only affects a small group of individuals, we believe that by sharing our experiences living with a rare disease, we can help the broader rare disease community with their rare disease journeys. Join us, Taylor and Liz, as we further explore the impact of rare diseases on our lives. Together we are 'Not so Rare!' Looking for updates or a way to connect with Taylor and Liz? Look for us on Instagram by following @NotSoRarePodcast as well as on Facebook by searching for Not So Rare Podcast. Also, feel free to message us at notsorarepodcast@gmail.com. We love to hear from all of you!
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Rare Disease and Family Planning - Part 4
This week Taylor and Liz revisit their Rare Disease and Family Planning mini-series. In this episode, Taylor shares some exciting updates on her journey. We also revisit Liz's story.
Support the show
Want to support and connect further with Taylor and Liz?
Follow and connect with us on Facebook and Instagram!
Also, feel free to message us at notsorarepodcast@gmail.com. We love to hear from all of you!
Visit our official merchandise store at https://www.bonfire.com/store/not-so-rare-podcast-store/ and show your support! -
Life Update from Taylor & Liz
Taylor and Liz use this week's episode to provide an update on what is new with their lives over the last several months.
Support the show
Want to support and connect further with Taylor and Liz?
Follow and connect with us on Facebook and Instagram!
Also, feel free to message us at notsorarepodcast@gmail.com. We love to hear from all of you!
Visit our official merchandise store at https://www.bonfire.com/store/not-so-rare-podcast-store/ and show your support! -
Advocacy
In this week's episode, Taylor and Liz discuss their own path in identifying ways to be advocates for their Rare Disease. When choosing ways to help your rare disease community, consider identifying advocacy areas that interest you and can have a broad impact.
Support the show
Want to support and connect further with Taylor and Liz?
Follow and connect with us on Facebook and Instagram!
Also, feel free to message us at notsorarepodcast@gmail.com. We love to hear from all of you!
Visit our official merchandise store at https://www.bonfire.com/store/not-so-rare-podcast-store/ and show your support! -
THE Not So Rare Mom
You have heard Taylor and Liz's story, this week we are excited to have THE Not So Rare Mom join the podcast. Taylor's mom joins to share her perspective as a Rare Disease Mom while supporting her daughter through her education and life milestones while also supporting her diagnostic, clinical, and advocacy journeys.
Support the show
Want to support and connect further with Taylor and Liz?
Follow and connect with us on Facebook and Instagram!
Also, feel free to message us at notsorarepodcast@gmail.com. We love to hear from all of you!
Visit our official merchandise store at https://www.bonfire.com/store/not-so-rare-podcast-store/ and show your support! -
Challenges of the Self-Diagnosed
Many rare disease patients struggle with obtaining a diagnosis for their disease. Often this leaves patients trying to research on their own in order to help the process. Taylor and Liz this week discuss the challenges and impacts of patients who have self-diagnosed their disease.
Support the show
Want to support and connect further with Taylor and Liz?
Follow and connect with us on Facebook and Instagram!
Also, feel free to message us at notsorarepodcast@gmail.com. We love to hear from all of you!
Visit our official merchandise store at https://www.bonfire.com/store/not-so-rare-podcast-store/ and show your support! -
Post Appointment Anxiety
Medical appointment anxiety does not end once you leave the doctor's office. This week Taylor and Liz discuss their experiences with post - appointment anxiety along with how they have learned to cope throughout their medical journies.
Support the show
Want to support and connect further with Taylor and Liz?
Follow and connect with us on Facebook and Instagram!
Also, feel free to message us at notsorarepodcast@gmail.com. We love to hear from all of you!
Visit our official merchandise store at https://www.bonfire.com/store/not-so-rare-podcast-store/ and show your support!
Customer Reviews
A mom…
My daughter has a rare disease. Sometimes it’s hard to distinguish what’s the disease or what’s outside of that. My daughter feels alone, she’s having more pain now that puberty has hit. I appreciate your willingness to be open about your life with GLA. My daughter has capillary venolymphatic malformations in her upper extremity. She wears a compression garment and takes sirolimus (since she was 3), but we aren’t seeing much help with sirolimus anymore. While I hate this disease, I do wish she has others to talk with. It’s a difficult time for her.
So Excited I found this podcast!!
I’ve just recently found this podcast and have listened to a few episodes and I just can’t believe how many times I’ve nodded and said, “exactly” and “yes 100%” !!!
Bless you both SO much for talking about these struggles. (I’m living with a lymphatic malformation that I’ve had since birth) and I’ve been/felt so alone. Don’t get me wrong my family has been very loving and try to be as supportive as possible my husband cares and loves me deeply, but no one can join you in this truly unless they live it. I find myself that getting angry sometimes with the healthcare system and also how I’ve been treated once I turned 18. This disease for me doesn’t in any way just poof go away at it has no concept of what age makes a person a legal adult.
Hearing you ladies describe your experiences and outlook so candidly, it helps me put some of my negative feelings into perspective and helps the anger that doesn’t serve me well just knowing I’m so not alone.
Thank you! Love love love your show!
Yes! So relatable!
I have two rare diseases and I know how hard it is to talk openly about it. I appreciate the vulnerability. I can relate to the hosts and look forward to new episodes to drop. Thanks for what you are doing for the Rare Disease community as a whole!!