Wait How Do You Spell That? is a rare disease podcast produced by Patient Worthy. We talk about issues affecting people rare and underdiagnosed conditions and interview advocates from across the community. We‘re definitely not doctors, and we can‘t give you medical advice. We‘re just here to chat and learn about the diseases that even doctors can‘t seem to spell. Check out the latest in rare disease news at PatientWorthy.com.
Episodes
Monday Nov 27, 2023
Monday Nov 27, 2023
In observance of Alzheimer's Disease Awareness month, we sit down with patient advocate Kathi Herzog -- who was diagnosed with moderate Alzheimer's earlier this year. While not a rare condition, Alzheimer's research has informed the search for treatments in rare neurodegenerative conditions and Kathi's journey to diagosis will probably sound very familiar to the rare community. Kathi's husband, Dave, also joins us to talk about their journey together and why caregivers need support as well.
If you'd to learn more about Alzheimer's Disease, check out the resources here.
If you'd like to get in touch with Kathi, email her here: kathleenherzog4@gmail.com
If you'd like to get in touch with Dave, email him here: daveherzog4@gmail.com
Editor’s Note: Chronic conditions and rare diseases don’t discriminate. Patient Worthy and its partners are interested in amplifying the voices of those from all identities and backgrounds. If you have an Alzheimer's Disease journey to share, reach out here to learn more about how your voice can help spread awareness and inspire individuals from all walks of life.
Friday Nov 10, 2023
Friday Nov 10, 2023
In this episode of the podcast we discuss neuromyelitis optica spectrum disease (NMOSD), a rare autoimmune disease that effects central nervous system function and can result in symptoms such as pain, vision loss, limb weakness and numbness. Joining us are Dr. Maggie Kang and Nell Choi, mother and daughter patient advocates who talk about NMOSD and their experiences since Nell was diagnosed at a young age.
To learn more about NMOSD go here: NMOSD at the National Organization for Rare Disorders
You can pick up a copy of Nell's book here: My Hospital Story - Amazon
Learn About Dr. Kang's work supporting the wellbeing of parents of children with rare conditions here: MaggieKangMD.com
Thursday Oct 26, 2023
Thursday Oct 26, 2023
For Breast Cancer Awareness month, in this episode we're speaking with Jasmine Souers, the president and CEO of the Missing Pink Breast Cancer Alliance about some topics that aren't often covered in mainstream oncology. We discuss the individual genotypes, treatment factors and other considerations that make each case of breast cancer a "rare" experience. We also talk about the experiences of people of color, the "spectrum of need" in patients, and how to build equity in the breast cancer community.
If you'd like to learn more about the Missing Pink Breast Cancer Alliance and the work they're doing in the community, you can check out their website at TheMissingPink.org.
Also be sure to pick up a copy of their newly-launched More Life Magazine for breast cancer patient stories, perspectives, resources and more! Get your copy today at MoreLifeMag.com.
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Chronic conditions and rare diseases don't discriminate. Patient Worthy and its partners are interested in amplifying the voices of those from all identities and backgrounds. If you have a breast cancer journey to share, reach out to learn more about how your voice can help spread awareness and inspire individuals from all walks of life.
Friday Oct 13, 2023
Friday Oct 13, 2023
Patient Worthy's award-winning podcast is back! In this episode, we discuss Von Hippel-Lindau Disease. That's a genetic condition that causes constant tumor growth, commonly in the eyes, spine, brain and kidneys. Patient advocate Justin Corbin shares his diagnosis and treatment journey, which stretches from the 1990s today.
Read more about Justin's journey in this interview over at PatientWorthy.com.
To learn more about Von Hippel-Lindau Disease, check out the VHL Alliance.
Chronic conditions and rare diseases don't discriminate. Patient Worthy and its partners are interested in amplifying the voices of those from all identities and backgrounds. If you have a journey to share, reach out to learn more about how your voice can help spread awareness and inspire individuals from all walks of life.
Monday Dec 19, 2022
Monday Dec 19, 2022
We speak to Jennifer and Chrissy from the Couraeous Parents Network, one of Patient Worthy's newest partners. CPN is a non-profit organization and educational platform that orients, empowers and accompanies families and providers caring for children with serious illness. Learn more about what they do and how you can get involved over at their website, CourageousParentsNetwork.org.
Be sure to follow CPN on Facebook!
Friday Sep 30, 2022
Friday Sep 30, 2022
On today's episode, we sit down with two of the co-founders of GACI Global, a nonprofit organization centered around families affected by Generalized Arterial Calcification of Infancy. We also speak with the Vice President of Physician and Patient Strategies at Inozyme Pharma, which is pursuing novel therapeutics for the treatment of abnormal mineralization disorders such as GACI. Learn why close cooperation is so important in the development of treatments for rare conditions and why newborn screening is absolutely vital.
Important Links
Friday Sep 02, 2022
Friday Sep 02, 2022
Thank you for sticking with us while we took an unexpected break! We now return to our regular schedule of helping to share the stories of the rare disease community. In this week's episode, we sit down with Melissa Kennedy and Dominique Pichard of the International Rett Syndrome Foundation (IRSF). To learn more about Rett Syndrome and see how you can get involved, visit RettSyndrome.org.
Tuesday Jun 21, 2022
Tuesday Jun 21, 2022
In this episode, we sit down with Tiffany Sammons and Pam Mace from our partners over at NORD to preview the upcoming Living Rare, Living Stronger Patient and Family Forum. This exciting yearly event brings together patient advocates and their families from around the world.
Learn more about the Patient and Family Forum, taking place June 26 in Cleveland, Ohio, here.
Follow Nord on social media: Facebook Twitter Instagram LinkedIn
Friday May 27, 2022
Friday May 27, 2022
In this episode, we speak with Shelley Frisbie and Dr. Kaumudi Bhawe of Cancer Commons, a non-profit dedicated to providing assistance to advanced cancer patients. We discuss why having a dedicated support team can be so helpful and why every cancer diagnosis is unique.
To learn more about Cancer Commons, visit their website here. You can also connect with them on Facebook, Twitter and LinkedIn.
Thursday May 05, 2022
Thursday May 05, 2022
In this episode, we speak with Patient Advocate Nathan Ehrlich about SAMD9L mutations and their connection to a range of conditions, including bone marrow failure disorders, cytopenia and ataxia-pancytopenia syndrome. If you'd like to get in touch with Nathan, you can email him at nathan.ehrlich@gmail.com. You can also check out the SAMD9L mutations Facebook support page here.