POZ Profiles: 31 at 30 : Loreen Willenberg

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Back to home » POZ Profiles: 31 at 30 » May 2011



May 2, 2011

Loreen Willenberg

HIV controller, former landscaper who started the Zephyr Foundation to promote controller studies, positive for 19 years.

Loreen WillenbergJune 5, 2011, marks 30 years since the first published accounts of what became known as AIDS.  For this anniversary, we asked 31 long-term survivors who’ve appeared in POZ what moves and sustains them and whether they think they’ll live to see a cure. Why 31? One for each year, and one more for good luck.

What’s the most helpful thing anyone has said to you over your years living with HIV?

In 1995, three years after my diagnosis with HIV, my physician said, “One of these days, scientists are going to want to study you, because there is something different about the way your immune system holds back this infection.”

At that point, I finally let go of the deep fear that HIV was going to cause my premature death, but I did remain very concerned that it would make me sick.

What has been your major economic challenge since testing positive?

In July 1992, when I was 38 years old, I was given a “death sentence” by the public health nurse who delivered my HIV-positive test results. She suggested that I “tie up my loose ends” because “HIV would kill me in less than six months.”

This startling news caused me to completely alter my plans to expand the thriving landscape design and construction firm I had established in 1985. Instead of hiring more employees and purchasing a fleet of trucks and necessary equipment to serve my growing list of residential and commercial clients, I decided to completely scale back the business.

I have since estimated that my HIV diagnosis contributed to the loss of potential earnings in the hundreds of thousands of dollars—perhaps more—over the past 18 years, much to my chagrin. However, I’m incredibly grateful to be alive and I try to live without regret over what could have been had I tested negative that day.

I can’t believe that 19 years have passed since that fateful day of diagnosis. It’s hard to fathom where my life would have gone if HIV had not found me. But I must say that I’m grateful to its lessons, as it has meant that it has assured my meeting wonderful people like you [at POZ].

Do you think there will be a cure in your lifetime—and if so, will you benefit from it?

I have more hope than ever before that a cure for HIV will be achieved in my lifetime. The greatest challenge now in front of us is how to translate to the general HIV-positive population the “functional cure” represented by HIV controllers and LTNPs [long-term nonprogressors, or people whose body controls HIV without medication] or a “sterilizing cure” (total elimination of HIV-infected cells within the human host).

Once this challenge is met, the benefit to me will be a tremendous sense of gratitude, humility and relief that in some small way, I was able to make a difference in the lives of many, as a participant in the studies of the HIV controller and LTNP community.

What advice would you give to someone newly diagnosed?

“Decide to LIVE!”

Click here to read this article as it appeared in the June 2011 issue.

Click here to read more of our "30 Years of AIDS" coverage.

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