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

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/