According to the Journal of Pain and Symptom Management, carcinoid syndrome diarrhea is debilitating and life-threatening. It often leads to a diagnosis of NETs. Usually patients with NETs believe they have a gastrointestinal infection (GI) because of similar symptoms; many doctors misdiagnose it as GI disease, too.
Zuniga takes Xermelo, a medicine that controls her carcinoid diarrhea symptoms. It was approved by the Food and Drug Administration in February of this year. It’s the first new treatment for NET patients in more than 10 years. In the past eight years, she has had eight surgeries related to the tumors. She’s currently participating in the National Institute of Health’s clinical trial “Evaluation of 68Gallum-Dotate PET/CT for Detecting Neuroendocrine Tumors.”
As a rare disease patient, Zuniga understands the challenges, frustrations, and hardships that she and others in her community face on a daily basis. That’s why she joined Arizona’s Carcinoid and Neuroendocrine Cancer Foundation and serves on its board when she’s not working at the University of Arizona’s Health Professions Workforce Education, which assists residents in rural and underserved communities.
Working at the University for close to 16 years has helped her amass a wealth of contacts and knowledge in the health field. She has called on every expert she knows to volunteer their services to help communities of people with rare illnesses. She credits her tenacious nature and resourcefulness to her parents and to the patients she meets at support groups. “They give me strength and motivate me to keep on learning,” she said.
She leads monthly support groups and tells anyone who asks, “I see my role as an educator. Plus, I learn a lot from the people in these groups.”
She has organized a number of rare disease seminars for patients, their friends and families, and for health professionals. These seminars are led by doctors and people in the health profession to talk about breakthroughs, symptoms, health insurance, emotional support, and other aspects associated with rare diseases. All seminars are participatory where attendees can ask questions and break off into smaller groups to discuss specific matters. Often in the smaller groups, medical professionals learn from patients with rare diseases about their symptoms.
The lectures are usually held at the University of Arizona in Phoenix. Her goal is to host them all over the state and beyond. She’s aware that people battling illness have difficulty traveling far to attend workshops.
She’s currently organizing a NET Awareness Day event on November 10 that will have a web component so people all over the country can watch. All events are free.
October 23, 2017
Janet O’Dell, RN