Living with Systemic Mastocytosis
Welcome to the latest episode of the “Allergy, Asthma & Immunology Innovations” podcast. We continue our focus on mast cell diseases with a discussion on systemic mastocytosis, one of the more common mast cell diseases. Our hosts Kortney Kwong Hing and Payel Gupta, MD, of The Itch Podcast get the patient perspective on living with such a complex disease.
You can listen to or download the podcast on ItchPodcast.com for listening anytime, anywhere. The podcast can also be downloaded at:
The podcast series is sponsored by Blueprint Medicines.
Kortney and Dr. Gupta speak with Tammie who highlights the challenges of diagnosing systemic mastocytosis, the importance of persistence and how to navigate and evaluate online resources. Her story highlights the importance of support networks and communication with healthcare providers.
This is the sixth episode of a series on mast cell diseases. The series is a collaboration between Allergy & Asthma Network and The Itch Podcast.
This episode covers…
- Tammie’s mastocytosis journey
- The challenges of not getting a proper diagnosis
- The pros and cons of using Google to research medical conditions
- What to do when a doctor does not want to take you on as a patient
- How Tammie separates the disease from her life
- How to navigate work with a chronic disease
- Working with a mental health team
- How do you ask your family/friends for help?
- The patient relationship with the healthcare team
- Pros and cons of an online community for chronic disease – and the importance of a real-life community
Additional Resources
