• Jessica Herrala experienced a 14-year delay in achalasia diagnosis, initially misdiagnosed with bulimia.
• Achalasia is a rare swallowing disorder where the lower esophageal sphincter fails to relax, leading to food retention.
• Herrala underwent multiple surgeries, including an esophagectomy, and now advocates for patient self-advocacy in healthcare.

Jessica Herrala, now 48, experienced a prolonged and frustrating journey to diagnose achalasia, a rare swallowing disorder. For 14 years, she endured debilitating symptoms, including regurgitation and difficulty swallowing, and was initially misdiagnosed with bulimia. This misdiagnosis led to unnecessary therapy and emotional distress. Eventually, a motility specialist correctly diagnosed her with achalasia, leading to a series of surgeries, including an esophagectomy. Herrala's story highlights the challenges of diagnosing rare conditions and the importance of patient advocacy in healthcare.

• What: Jessica Herrala's experience with achalasia, a rare swallowing disorder, including her initial misdiagnosis, the impact on her life, the treatments she underwent, and her advocacy for patient self-advocacy.
• Who: Jessica Herrala, Dr. John Pandolfino (chief of gastroenterology at Northwestern Medicine), Meghan Holohan (TODAY.com reporter), various doctors involved in Herrala's diagnosis and treatment.
• When: The events occurred over approximately 14 years, starting when Herrala was 34. The esophagectomy was performed about four years ago.
• Where: Chicago, Illinois, and Northwestern Medicine.

The article effectively illustrates the challenges faced by individuals with rare diseases in obtaining accurate and timely diagnoses. Herrala's initial misdiagnosis with bulimia underscores the importance of considering less common conditions when patients present with unusual symptoms. The detailed description of her surgeries and subsequent complications highlights the significant impact of achalasia on her quality of life. Herrala's advocacy for patient self-advocacy underscores the need for patients to actively participate in their healthcare and seek second opinions when necessary. The inclusion of Dr. Pandolfino's expertise provides valuable context on the nature and treatment of achalasia.

You have to push. I really had to learn that. I had to listen to my own body and do what’s right for me.

The actual word in Latin means failure to relax. The thing that causes most of the problem is that your lower esophageal sphincter … doesn’t open up when you swallow.

It’s like the worst thing ever. It took every moment of two years to recover from that.

Jessica Herrala's story serves as a powerful reminder of the difficulties in diagnosing rare diseases and the importance of patient advocacy. After a 14-year journey marked by misdiagnosis and multiple surgeries, Herrala now leads an active and healthy life. Her experience underscores the need for medical professionals to consider rare conditions when evaluating patients with unusual symptoms and for patients to actively participate in their healthcare decisions. Herrala's advocacy efforts aim to empower others facing similar diagnostic challenges.