#71 - Living with systemic mastocytosis

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/