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.
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 this episode:
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:
TikTok https://www.tiktok.com/@rachelllargentphillips
Instagram https://www.instagram.com/tammie_rachell/
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/
