By Loreen Willenberg
November 28, 2011
Opportunities to speak to mainstream media representatives about the wonder of HIV controllers are few and far between; when they do happen, they are typically oriented to the scientific perspective, and are rarely centered on the personal one.
Imagine my surprise, then, when an invitation arrived to discuss my journey as an HIV controller from the personal point of view with Dr. Howard Gluss, a psychologist from Southern California, on his radio program called "Life With Dr. Howard Gluss." Our interview, entitled "HIV Controllers and a Cure to AIDS With Loreen Willenberg," was broadcast live from Las Vegas to Dallas on KFNX 1100 AM on Friday evening, October 28.
I am deeply grateful for Dr. Gluss' compassion and concern, as we talked about those early years following my HIV-positive diagnosis, when I lived with the very real fear of illness, and perhaps death, and how I coped with those feelings long before I learned about my unique ability to control the virus. We also discuss what being a research study volunteer means to me, my work with the Zephyr Foundation, and how research data from the community of HIV controllers are advancing scientific efforts toward the cure.
Many thanks to my dear friend, Victor de Jarnette of Oklahoma City, for suggesting the title for this blog entry, and to my sisters, Lee Ann and Laurie, for listening to the live broadcast!
This interview was an extraordinary experience for me. I invite you to listen -- and, as always, I welcome your thoughts and comments.
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BLOG: Life as an Elite Controller
Photo credit: Bob Roehr
Loreen Willenberg, a resident of California, has survived HIV infection since 1992. She is part of a tiny group of people with HIV that scientists call "elite controllers." What is an elite controller? It's someone with HIV who has never had a detectable viral load, although they have never taken HIV meds. She also has an astonishingly high CD4 count and has never experienced any adverse health effects from HIV. Loreen considers it her responsibility as an elite controller to help other people with HIV, which is why she's currently participating in three clinical studies in which researchers are trying to understand how people like Loreen actually control the virus. In fact, she's created a new organization for people like her called the Zephyr Foundation.
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January 10, 2012 - Memories of Bonnie G.: A Blog Entry by Loreen Willenberg
November 28, 2011 - Radio Hope: A Blog Entry by Loreen Willenberg
February 7, 2011 - On-the-Air: My First Radio Interview -- "Have You Heard of HIV Long-Term Nonprogressor?": A Blog Entry by Loreen Willenberg
December 6, 2010 - Marvels, Milestones and Mom: The Ups and Downs in a Year of Functional-HIV-Cure Research -- A Blog Entry by Loreen Willenberg
July 23, 2010 - The Alphabet Soup of Immune Control: ADCC Antibodies, (Memory) B-Cells, Elite Controllers and Exposed Sero-Negatives -- Will They Amount to Z? A Blog Entry by Loreen Willenberg
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