Living with MCAS and POTS: A Patient's Journey of Struggles and Triumphs - An Interview with Kelly

In this interview, Linda has the pleasure of speaking with

Kelly, a guest from the United States who shares her journey of dealing with

MCAS and POTS. Kelly discusses how she first noticed that something was wrong

with her body when she was a child due to severe GI symptoms, which led to her

receiving her first colonoscopy at the age of ten. However, despite years of

experiencing worsening symptoms, Kelly did not receive a formal diagnosis until

2019. She describes her frustration and the challenges she faced while seeking

answers from various specialists, highlighting the systemic factors within the

healthcare system that make it difficult for patients like herself to receive

proper care. As a social worker and a patient herself, Kelly provides unique

insights into how care for undiagnosed patients could be improved, emphasizing

the importance of physicians believing and trusting their patients, providing

them with resources, and access to care to help them find accurate diagnoses.

Kelly also discusses the complexity of MCAS, a multi-system disorder that can

affect various organs and the skin, making it difficult to recognize and

diagnose. She shares her experience of how finding a physician who understands

the condition was crucial to getting it under control. Overall, Kelly's story

sheds light on the challenges of living with an undiagnosed condition and the

importance of improving healthcare systems to support these patients.

Kelly is taking LDN, Low Dose Naltrexone.