Ep. 71 Living with systemic mastocytosis
Part of the series: Allergy, Asthma & Immunology Innovations Podcast
This podcast was made in partnership with Allergy & Asthma Network. We thank Blueprint Medicines for sponsoring this podcast.
LISTEN TO EPISODE 71:
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What is it like when an unpredictable disease like systemic mastocytosis forces you to change the trajectory of your life?
As we continue to unpack mast cell disease, Dr. G and Kortney wanted to get the patient's perspective on living with such a complex disease. Tammie joins the podcast to discuss her journey battling mastocytosis, a rare condition affecting mast cells in the body (learn more in our episodes about the basic science of mast cell disease).
Tammie highlights the challenges of diagnosis and the evolving landscape of medicine, emphasizing the importance of persistence and using your better judgment when navigating online resources. Tammie's story underscored the significance of support networks, coping strategies, and effective communication with healthcare teams in managing chronic illness. She also discussed the benefits and drawbacks of online communities, advocating for a balance between virtual and real-life connections for holistic support.
If you ever feel alone on your chronic health journey, know you aren’t! Tammie's resilience and wisdom serve as a beacon of hope. We hope this inspires you to approach your health journey with determination and a sense of community..
What we cover in our episode about living with mast cell disease:
Tammie’s mastocytosis journey
The challenges of not getting a proper diagnosis
The pros and cons of being able to google medical conditions
What do to when a doctor does not want to take you on as a patient
How Tammie separates the disease from her life
How do you navigate work with a chronic disease?
Working with a mental health team
How do you ask your family/friends for help
Patient's relationship with their healthcare team
Pros and cons of an online community for chronic disease and the importance of a real-life community
Connect with Tammie online
More in the Mast Cell Disease Series:
Resources about mast cell disease:
Mast Cell Disease Overview: https://allergyasthmanetwork.org/health-a-z/mast-cell-diseases/
What is Anaphylaxis? https://allergyasthmanetwork.org/anaphylaxis/
What is Epinephrine? https://allergyasthmanetwork.org/anaphylaxis/what-is-epinephrine/
The Mast Cell Disease Society: https://tmsforacure.org/
We thank Blueprint Medicines for sponsoring this podcast.
Time Stamps
Ep. 71 Living with systemic mastocytosis
00:01:47 - Tammie’s mastocytosis journey
00:04:02 - The challenges of not getting a proper diagnosis
00:05:02 - Medicine is constantly evolving
00:05:37 - The pros and cons of being able to google medical conditions
00:07:30 - Tammie’s advice to patients on how to do your own research
00:12:12 - What is it like to live with mast cell disease?
00:13:07 - How Tammie separates the disease from her life to improve her quality of life
00:14:17 - How do you navigate work with a chronic disease?
00:17:20 - Working with a mental health team
00:17:52 - How do you ask your family/friends for help
00:19:57 - Patient’s relationship with their healthcare team
00:20:32 - Recap Tammie’s two coping strategies that improve her quality of life
00:22:34 - Online communities for mast cell diseases
00:23:12 - Pros and cons of an online community for chronic disease and the importance of a real-life community
00:28:02 - Tammie’s final words of wisdom
