What drives you to spend so much time doing this? I mean, you don't have to participate in all these studies.
I don't have to, but you know what? It's necessary. It's a personal purpose. If there's any way I can help, if there's any way I can help, I'm all about that. It's not a problem.
So you've never had any side effects from HIV.
No illnesses related to HIV in all these years.
No, and I don't get colds and I don't get the flu. You know, my mom, she always told me, "If you were carrying an infection, you always needed to have it for a super, super long time before you showed any evidence, any symptoms."
You have an abnormally strong immune system it seems.
Yes, from what I understand from Dr. Stephen Migueles at the National Institutes of Health, if you want to talk about the science, the CD4s would be the general fighters, those are the fighting cells, and they get support from the CD8 cells, which are basically the soldiers. What they are seeing is that when my fighter cells are exposed to the HIV, I multiply CD8s. I multiply a huge army of soldiers like they never seen before. The NIH is focused on why I proliferate fighter cells. They expressed to me in June of last year that they've never seen a person multiply cells so quickly, so they know that's a unique thing.
Then of course, they're interested in my genes. I think it was Dr. Walker who originally discovered that I do carry the European descent gene. I don't know if you're familiar with the Spain cohort. Originally, I think ten years ago, they came up with this. They wanted to look at the survivors of the black plague. I'm a definitive carrier of the HLA-B57 gene. That is what that is called. And for all practical purposes, with their collaboration with the Human Genome Project, I think that genetics is the new groundbreaking frontier of research [on HIV-positive nonprogressors].
When I go back to Boston in May I'm going to have quite a list of questions for Dr. Walker, and I'm going to get an update of what the last year-and-a-half on his end has produced where I'm concerned. But it's still a mystery. I'm happy to say they're finding more of us. I think it's going to validate the work they're doing.
How often do you see these people, Bruce Walker, Steven Deeks or Stephen Migueles at the NIH? Are you visiting each place once a year?
Once a year for Boston. U.C. Davis wants to see me for this new study four times in one year. The NIH wanted to get me back when I was busy falling in love, so it turns out I will end up seeing them once a year. Even though it sounds like a lot, there's never any pressure. It's whenever it works with my schedule. They're lovely. They treat you so well when you're there. They're very forthcoming with their information, so I really appreciate that.
Do both of them pay for your travel there?
Well, you know, we have to put out some money. Some institutions are a little better funded than others. The NIH is a little bit more stingy in terms of their per diem. I did learn last year that you have to put out some of your money before you can get reimbursed. There are things that I'm working on to perhaps create an organization that will cash advance interested participants, so that they're not having to put their money out for the taxis or the additional night at the hotel. I keep hearing that lots of the money is invested into the research, and they can't really afford to fly a lot of people in.
But I have to tell you that if it's true that there's more long-term nonprogressors out there, we need to scare up some more funding streams that will support these participants who live farther away and want to participate.
I think there's a barrier present and I think it's the finances, so some colleagues of mine are talking about how to fix that. Whether it would be an organization devoted to long-term nonprogressors, or elite controllers as they're called now, I don't know.
I'm kind of in a jumble with my relocation, but it would be my dream to create some kind of a support network [for people] that want to participate, but can't get funded out of the institution. I don't know. Maybe The Body.com can help me figure that out! [Laughs.]
Loreen with Dr. Bruce Walker at the XVI International AIDS Conference in Toronto, Canada, August 2006. Loreen is participating in Dr. Walker's study on "elite HIV controllers."
Maybe. We're actually running out of time. Before we close I wanted to ask you about your coming out. You lived sort of anonymously for years. You only started to speak publicly after you attended the International AIDS Conference in Toronto last August. It hasn't been a year since then. How has going public changed your life? People can Google your name as soon as they hire you, and they can find out you're positive. Has that changed your friendships? Has it changed your work? Has it changed what it's like to go to the grocery store?
The amazing thing that happened, Bonnie, is that people felt I was accessible. After the article about me was published in my local newspaper, I had bank tellers in that town hug me as soon as I walked into the door and then take me to the side and say, "You know, Loreen, I have wanted to ask this question. Do condoms work? When should I tell my boyfriend that I want us to get tested?"
It kicked doors open like I never would have believed. It was actually the most positive thing that I have ever done in my life. And I want to tell you something about that: I showed the highest CD4 count, ever, in my 14-year history, right after I did the public disclosure.
Because so many people were so supportive.
Because I disclosed, yes. I took that weight off my shoulders. Some of us, some of my colleagues, are very interested in the neuroimmunology work that is being done on the mind/body/spirit connection. I'm happy to say that there are some medical professionals [interested in the field].
As recently as January, there was a young psychologist in Seattle who just published a paper that was published in Psychosomatic Medicine. I wrote to him immediately because what I have been feeling about this issue, he wrote about. He said disclosure boosts CD4 counts. So the psychic part of things is being looked at in addition to the virologic and immune system science of it. I'm a very interested person in all of this.
I have to tell you that in my life [disclosing] was the single most healthy thing I ever could have done for myself. I got phone calls and e-mails from people like you wouldn't have believed.
This was after the article in your local newspaper?
Everyone read it?
Pretty much! It was phenomenal how many of my girlfriends who were involved in Internet dating called me, telling me that maybe they had unsafe sex. What should they do about it?
It was really amazing! It just seemed like as soon as I put that out there. people were wanting information. I think that's a very important thing these days, getting it out to the youth, dispelling these myths that still remain.
So you have been speaking to groups?
Tell me about what you have done.
As soon as I got back from the International AIDS Conference I was invited to speak to the staff of a local women's center. After 22 years they had developed a wonderful group of people to counsel rape victims and domestic violence abuse victims. They asked our local Ryan White case manager and me to come in and speak to the staff.
It was a very positive experience. What surprised me, however, were the questions [the staff asked]. It was very elementary questions like, "How is the virus transmitted?" "Can you get it from kissing?" "How effective are the condoms?" Very elementary questions. So a one-hour booking turned into three.
A month later I was invited to speak to two classes. It was actually a human sexuality class in Fulsome, California. I was escorted by a friend of mine, who has been an HIV educator in that area for like 18 years. We had 70 kids both times. One was a day class and one was an evening class. The reaction from these young people was just so positive. They were so wonderful, so curious, and really asked very pertinent questions. They had their laptops and were very interested in everything that we had to talk about. We were also talking about HPV [human papillomavirus], hepatitis, other STIs [sexually-transmitted infections]. Even that class, even though it was an hour-and-a-half booking, turned into two-and-a-half hours. It's been an amazing experience.
Loreen poses in the Hosta Gardens at the U.S. National Institutes of Health, June 2006.
So you have enjoyed that? You're planning on doing other --
-- Oh, I love it. I absolutely love it. Yes. And I would hope that I have the time to stay focused on the kids. I really think that's where it's important. The infection rate among 13- through 24-year-olds is just escalating. We're getting to desperate and dire straights with this. We need more people to get out there and speak to these kids. Absolutely!
And I guess finally, I wanted to close with something you could tell our audience. What has kept you strong all these years? Is it religion? Is it something spiritual? What do you hold on to in moments of extreme anxiety or fear?
You know, my work with plants has always been precious to me. I've been a gardener. I love everything that's growing. My doctors even told me, "You know, Loreen, I think your connection with the earth is really a large part of who you are."
Also, having a lot of compassion for people in trouble has kept me strong. I love helping folks. For me, personally, being in this circumstance, I think that every day I wake up and realize that life is a gift. There's not a whole lot of time to be wasted. I might sound Pollyanna-ish, but from a spiritual base, I believe the world is a good place and that the possibilities are endless. I can't tell you how exciting it is to talk to so many people who call me that are newly diagnosed. I just had a call from a young man out of Fort Worth, Texas yesterday. I just kind of dispel the fears and tell him, "You're going to be fine. Educate yourself. How is your support system? What are you doing in your life to support your immune system?"
There's a very interesting program that I would like to talk to you further about when we are done with our interview or another day. It's something called the L.I.F.E. Program, based out of San Francisco. A good friend of mine is the director of a group called the Shanti organization. Have you heard of them?
I've heard of them, yes.
Jeff Leiphart has implemented this really fabulous support group system called the L.I.F.E. Program. It's a 16-week-long support program that was initially just going to be implemented online. I believe today he is in nine separate cities in the nation. What they look at is the spiritual connection, your health regimen, your support group. He's got a really intensive questionnaire of about 240 points. Once they summarize your answers to those 240 questions they create an 18 co-factor list of areas that you could improve in your life. I've heard nothing but positive response from this. I'm fully, 100 percent behind this gentleman. He's the one whose actual got me to start thinking about the mind/body/spirit connection to living a more healthy and better life. I really think we're on the right track.
Do you think the mind/body connection has anything to do with your amazing health?
Me personally? I come from a very strong family. I've been independent. I try not to live in fear. I just believe the good in people. You know what? It sounds strange to say it, but having HIV has made me feel more alive than I was before.
On that note I have to end. Thank you so much.
Thank you, Bonnie.
|I moved to Sacramento because I sensed there was a job here for me, and my instinct proved to be true. Through an interesting chain of events (and a lot of Divine Order, which I outlined in my first blog segment), I was hired as the new Camp Director for Sunburst Camps on April 1! I have thus "retired" from my landscape design and contracting company, The Earth Tenders, which was 23 years old this past March. I was compelled to transition into the HIV/AIDS field after four years of extraordinary pulls to the work.
On April 15th this year, I turned 54 years old. (YIKES!) I will celebrate my survivorship of 16 years positive on July 25 with the staff and campers of 'teen camp' in the redwoods of northern California, at the Sunburst Camp known as Camp Cazadero. Blessings abound as the Great Spirit made certain that I would be surrounded by love and compassion on this day.
I have also recently launched my Web site for the Zephyr Foundation, an organization I envisioned two years ago dedicated to information about HIV controllers at-large, in hopes to locate eligible candidates for clinical research studies focused on my "group"'s innate control of HIV.
Updated June 2008
Click here to read Loreen's blog!
Loreen Willenberg can be reached via e-mail at firstname.lastname@example.org.
If you are a person with HIV or a medical professional interested in participating in the HIV Elite Controller Study, please contact Rachel Rosenberg, Research Assistant, at 617-726-5536, or click here to send an e-mail. You can also click here to visit the study's Web site.
Click here to read a transcript of the interview with Loreen from the AIDS 2006 conference in Toronto, Canada.
Click here to listen to an interview with Loreen from the AIDS 2006 conference in Toronto, Canada. (9.5 min.)
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