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Thursday, July 30, 2009

Summer Days

SLIPPIN' AND A SLIDIN' THROUGH A SUMMER OF FUN!
Remember the lyrics from that song in the movie Grease, summer days are drifting away...? I know that's exactly how a lot us are feeling right now. I can hardly believe that we only have two weeks before the kids are back to school. This summer has gone by way too fast, but isn't that always the way it goes? 
We packed in as much fun as we could. There were early mornings spent playing golf, lazy days sleeping in late, Slip-N-Slide fun in the back yard, pool parties, Harry Potter movie nights, board games (can you believe the kids had never played Scrabble?!) and plenty of barbeques out on the deck... Oh, and the boys even found a stranded turtle and returned him back to the wild. I got my wake up call this afternoon that all this bliss was coming to an end when my son, Mitch, said, "Hey Mom, shouldn't we be getting our school supplies here pretty soon? Or are we waiting til the last minute like we usually do?" He's a funny kid. 
"School supplies?" I asked, surprised. "Oh geez! It's not that time again?! Not so soon?"
"Yes, Mother, it's time...again." He then gave me that perfected thirteen-year-old smirk. 
Determined to be on my game this year, we grabbed our supply lists and Alee (who just got her license today) drove us, making a beeline for the closest Walgreens. I prayed the whole way that  1. We'd make it there safely, and 2. That they wouldn't be out of the green composition notebooks like last year. 
Once safely inside the store and armed with a cart a piece, the boys loaded up on glue, crayons, backpacks, pencils, wide-ruled paper and almost every green composition notebook available to mankind! We are off to a good start... I hope you are too, and–like the song–hope you enjoy these last "summer days driftin' away..." 

YES, THOSE ARE CLAWS ON THIS SNAPPING TURTLE THE BOYS RESCUED!
ALEE GOT A FAN FOR HER DORM

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Friday, July 24, 2009

Eradicating HIV


Just how close we really are to curing HIV I can't say. I do know that we are definitely making strides in that right direction. Here's one such approach below that's definitely worth reading about.

VGTI Florida, University of Montreal Researchers Uncover Approach for Possibly Eradicating HIV Infection

VGTI Press Release:

St. Lucie, FL -- Researchers from the newly-established VGTI Florida and the University of Montreal have uncovered a possible method for eradicating HIV infection in the human body. The researchers have also revealed new information which demonstrates how HIV persists in the body -- even in patients receiving drug treatments -- and how the virus continues to replicate itself in individuals undergoing treatment. The research findings will be published in the online version of the journal Nature Medicine on June 21 and will be featured in an upcoming print edition of the journal.

Medical advancements in the past 20 years have significantly increased the survival rates of AIDS patients. In fact, approximately 90 percent of patients infected with AIDS can survive with the disease as long as they are treated with a complex series of antiretroviral drugs.

"Current medications allow us to control HIV and limit its progression in most cases," explained Rafick-Pierre Sékaly, Ph.D., current scientific director for VGTI Florida, a former scientist at the University of Montreal, and senior author of the research paper. "However, the medications do not eradicate the disease. Instead, the disease persists within the body -- much like water in a reservoir - and is never fully destroyed. We believe our latest research may help scientists and physicians overcome this hurdle."

The research team was able to identify a possible new way of attacking HIV by first identifying the specific cells where HIV infection persists in patients currently undergoing treatment.

They found that the disease is able to survive within two subsets of memory T-cells. Memory T-cells are a portion of the body's immune system and have the ability to learn, detect and attack certain types of infectious diseases.

By infecting cells within the body's own immune system, HIV is able to avoid antiviral treatments that are effective in stopping HIV in other cell types in the body. In-effect, HIV uses the body's own defense system as a hideout.

The research team was also successful in identifying how these HIV-infected memory T-cells replenish themselves. When populating T-cells, HIV does not replicate itself as it does in other cell types on the body. Instead, HIV persists in memory T-cells through cell division -- a finding that holds significant implications for possibly stopping the disease.

"Based on this research, we believe one possible method for eliminating HIV in the body is to use a combined approach," said Dr. Sékaly. "We propose the use of medications that target viral replication of HIV throughout the body, in combination with drugs that prevent infected memory T-cells from dividing. We believe that by attacking the disease in these distinct two ways at once for an extended period of time, we can eliminate the reservoirs of HIV that currently persist within the human body, leaving an individual disease-free."

The next step for researchers is to begin testing their proposed treatment method using animal models and newly developed therapies.

"While this is a preliminary finding, we are hopeful that this research discovery will guide us in eradicating HIV infection in the body," said Dr. Sékaly.

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Monday, July 20, 2009

By Suzan Stirling-Meredith

                                                                                  

Angels With AIDS 
by Suzan Stirling-Meredith
Imagine, for one moment that your life has been cut short. Not only your life, but that of your children also, because you’ve been diagnosed with the unimaginable — AIDS. I didn’t have to imagine it; I lived it.

Like most women with HIV, I contracted the virus by having unprotected sex while in a monogamous relationship. I’d unknowingly carried the virus for nearly a decade before being diagnosed in 1996, shortly after the birth of my second child.

We were lucky, in that my husband of now 20 years did not contract the virus, but unfortunately, both of our children did. Today, in the United States, with testing and treatment during pregnancy, the chances of an HIVpositive woman transmitting the virus to her newborn child is low, less than 2 percent.

Eleven years ago, I was naïve to think I wasn’t at risk of contracting HIV. We know better now.

My awakening came abruptly and unexpectedly in 1996. Our once vibrant 5-year-old daughter had, in a matter of months, wasted down to a skeletal, 31 pounds. At the same time, our newborn son, unable to breathe, lay hooked to a respirator at Children’s Hospital. The diagnosis was made. It was AIDS, and it was undeniable.

A good day was when Alee would eat a little.

Other days, I’d try to coax the food into her mouth, like she was a baby. It did little good.

In the mornings I’d put fresh sheets on the sofa, and carry her downstairs where I could watch over her every second of the day. I’d gently brush her thinning hair; still it came out in clumps between my fingers. I’d tell her fabulous, made-up stories about heaven while the theme music to “Barney” played on TV. My children were dying, and there was nothing I could do to save them. I only hoped that I would follow not far behind. I vowed to hold on; be there for them, and love them through the end. And it was upon us — or at least that’s what I’d thought. But life is full of wonderful surprises. What I’d thought to be our end, turned out to be the beginning.

I didn’t lose my children. Instead, we experienced the miracle of Protease Inhibitors; a gritty, blue powder that we’d mix with pudding and spoon into our children’s mouths twice a day. My husband and I watched in giddy disbelief, as the newly acclaimed medicine literally brought our children back to us. It was, and still is, nothing short of phenomenal.

Due to these, and other miraculous advances in treatment, children born with HIV are now expected to live long, healthy lives, and because Of this epic turn, we are seeing a steady increase in the number of people who want to adopt these special kids. As the number of deaths from HIV have drastically declined in America, the same cannot be said for other parts of the world where lack of treatment, education and stigma virtually cripple any and all efforts made to halt the epidemic. With 41 million people worldwide suffering with the disease, it is estimated that by 2010 a staggering 18 million children will be orphaned by of AIDS.

Adoption was something my husband and I talked about for many years. I can only describe it as some irrefutable pull of the heart which ultimately led us to our son. Early one Sunday morning, I found myself compelled to do more than talk about it. I walked downstairs to where my laptop sat atop an old antique writing desk I’d rescued from Goodwill years earlier. Its nicked surface was littered with stacks of books and magazines, a tiny wicker basket filled with odds and ends, and off to the side, a framed picture of my kids. I sat down and stared at Their rose-cheeked, smiling faces. I then took a deep breath and typed two monumental words, AIDS orphans into the search block.

Immediately, I pulled up two viable hits. I clicked on the first one. At the time, I chided myself. I was only looking for a child to sponsor, but all the while, I knew better. I was looking for a child alright; my child. I’d felt him calling me night and day, the child who needed us as much as we needed to find him.

Later that morning, my husband and I sat down together at the computer and pulled up the site for an orphanage in Addis Ababa, Ethiopia called AHOPE. We watched a video on the Web site, and near the end of it we saw the face of an angel. Right there in front of us was our son. We had nothing to go on, not a name, or even how old the video was. It took some phone calls and a little doing, but a few days later the phone rang. It was a woman we’d spoken with from an organization called Chances by Choice that helps facilitate the adoption of children with HIV. Her voice was Excited on the phone, “We found him and the great news is that he’s adoptable.” We were happy beyond words. It was just the beginning, but we felt ready for the challenges we faced.

The road to adoption was an unforgettable, amazing journey where set-backs and disappointments come with the territory, but this rang especially true where the HIV waiver form, I-601 was involved. The form is necessary because of an outdated law that was put into effect in the eighties that bans all noncitizens with HIV from entering into the United States.

It’s a law that should have been thrown out long ago, but so far no one has been able to do so. Currently, this law is under heavy scrutiny, and hopefully, if we don’t see it tossed out altogether, we’ll at least see it amended where adopted children with HIV are concerned.

Until then, we will have the obstacle of the waiver to contend with. Put simply, the I-601 form requires two signatures: One from the infectious disease doctor who will treat the child once he or she is in the United States, and one from the health officer at your local health department. Once approved, the waiver allows the adopted child to obtain a visa, enabling him or her to enter the United States. It’s a lot of bureaucratic red-tape that only takes up more time that is already of a precarious nature for these waiting children; children who in other countries are unnecessarily suffering, and succumbing to a disease that is now treatable.

The waiver process was the ultimate obstacle, but with persistence and diligence, my husband and I were among the first handful of pioneers to successfully meet all the requirements of the HIV waiver. On Nov. 1, 2006 my son planted both feet on American soil. The escort handed him to me and I lifted him into my arms and kissed his forehead. The shoes I’d sent for him were three sizes too large, and the clothes I’d carefully picked out for his journey were filthy and smelled of urine. His weary eyes looked into mine and he began to sob. It wasn’t the homecoming I’d imagined, but nonetheless I was flooded with a sense of great relief. He was mine, and he was finally home. We sat in the Seattle airport for six hours until our flight and eight hours after that, landed home where we were met by my husband who whisked us safely home.

The next eight days were filled with doctor visits, and the business of getting him well. He’d suffered from a severe ear infection and was thin, but other than that, he was surprisingly healthy and adjusted to family life amazingly well. We are truly blessed.

Today, our story of adoption is not so unique, and since bringing Yonas home, many people have followed in our first tentative footsteps.

Gradually, as acceptance and education grows, more people are becoming open to adopting a child with HIV. There are numerous Internet groups for people who want to learn more. As people become more educated they fear HIV less, and we are going to see many more of these children find families, treatment and life in the United States. Learning about the disease is an essential step toward curing the stigma that is still unduly attached to it.

Today, all three of my children are healthier than I could ever have imagined possible 11 years ago. The virus in their blood has been brought to “undetectable” levels, and their immune systems are healthier than the average kid.

I often tell my children that in a sense, we hit the lottery because of where we were born, because HIV treatment is accessible, and children who are adopted with pre-existing conditions are covered by most health insurance plans. When I see children in other parts of the world still struggling and dying with this disease, I can’t help but be reminded of my children, and our pertinent struggle.

How blessed we truly are. Without a doubt, my children and I have been given the greatest gift of all — a chance at life. It’s something we all deserve.

Suzan Stirling writes from Kentucky, where she lives with her husband and three children — two biological and one adopted from Ethiopia. She is currently writing her first novel. Stirling recently shared her family’s personal story in a video segment for PBS in the hopes of encouraging pregnant women to get tested. It can be viewed at www.RealSavvyMoms.com.


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Sunday, July 19, 2009

Disclosure: The how, where and why

Disclosure–does it ever get easier? Well...yes and no! Yes, because when you do anything often enough, it begins to feel second nature–natural almost. And no, because situations are always changing as are the reasons for disclosing. Over the years I've become somewhat of a pro at disclosing. It's not nearly as scarey as it used to be and I've had really good success with it. No one has ever bolted, fainted or layed on the ground gasping for air! There are situations where you just do it–you disclose–it's part of life. Most recently, my daughter has been thinking about getting a tattoo. We sat down with a wonderful artist and were talking over ideas. The conversation went something like this...
"That's a really nice picture... What do you think, Alee?"
"That's the one," she says.
"Great." He flips through his scheduler. "I've got an opening in July. How's that sound?"
Okay, so here goes. It's time to disclose. I take a breath. "Yes, we'd like to set up an appointment. Oh, but there is something you should know. My daughter is HIV-positive since birth." I barely exhale, just keep going. "She takes medicine that keeps her healthy. The meds also make the virus in her blood what's called, undetectable."
I'm scouring his face, watching his reaction. He doesn't even flinch, looks me straight in the eye. "I don't have a problem with that. When does she want to do it?"
I then gave him an out, just to be sure. "Are you sure you're comfortable with this? It's perfectly fine If you want some time to think about it."
"No... Really," he assures me. I have the right to refuse any service, but I'm fine with it... Haven't poked myself with a tat needle yet," he smiles at us.
I am put at ease and feel confident so we go ahead and set up the appointment. Over the last twelve years, I've had this same conversation with dentists, doctors, school personel, complete strangers and long-time friends. And I've been really successful. I credit this to three simple things:
1. Care–What's your reason for disclosing? It's because you care about that person. You want to give the other person knowledge so that they are at no risk of contracting HIV.
2. Education–Don't take for granted that people just automatically know about how HIV is and isn't transmitted. Take a few minutes to educate them. A little education goes a long way.
3. Respect–Give them the opportunity to make their own decision as to whether or not they feel comfortable. In other words, give them an out should they want one. The last thing I want is a nervous dentist with a drill in my mouth ; ).
Reasons for disclosure change. As my oldest gets ready to head off to college we find ourselves asking a whole new set of questions about disclosure, relationships and HIV. Often, I look to people who've been there–done that for the answers. Here's a couple who've been happily married for five years who set a great example of a mixed status couple (he's positive and she's not) as they spread the word about HIV, relationships and safe sex at college campuses all over the US. Meet Shawn and Gwenn...

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Thursday, July 16, 2009

When Pigs Fly...


What does it mean to be HIV-positive today vs. twelve years ago? And what will the next ten or twelve years entail? Oh, how I wish I had a crystal ball and could foresee the future! This much I do know... It's going to be great. We've come so far! I was talking with a friend of mine awhile back who lives in San Francisco. She retold a harrowing account of what it was like to be positive in the late eighties. She remembered all too well the horror of seeing people in their prime, thin and gaunt, walking the streets of San Francisco hooked to oxygen tanks; friends–people she cared about were dying of some strange disease they called AIDS. She recounted with tears in her eyes, the hospitals and quarantines, the chaos and world hysteria we all felt as we tried to figure out what was happening... What this thing called AIDS really was. It's been a long, long road.  

Twelve years ago, when my children and I were diagnosed, there was little hope. One doctor, in fact, told my husband and I to go home and enjoy what time we had left with our children because there was nothing more he could do to help them. Two months later, an experienced team of new doctors at St. Jude Children's Research Hospital gave us hope when they agreed to begin treating our children, then ages 4 and 9. They have been well ever since. Better than well. The virus in their blood has been undetectable for almost ten years and their immune systems are better than normal. We got a second chance at life.  

Did you know that today, a child born with HIV who has access to medicine cannot only expect to grow up but also, to grow old? We've made such tremendous strides in a relatively short time. Having lived with this disease for twenty-something years, I can't say I'll miss it when the day comes that I'm cured but I can say that it’s changed me in ways that would not have been possible otherwise. I think  hardships are just opportunities for growth. It's not what hardships do to you, it's what you do with the hardships that matter. 

Over these next few posts, I'll be sharing some of my experiences and lessons learned regarding disclosure along with some exciting advances in medicine. Everyday, things are changing and now is the time for your hearts to be filled with hope... For your children, your families and your future. I am always open to questions and thank you so much for your comments and readership. What I'd like to leave you with today is a feeling that all things are possible. Some people may say that a cure for HIV isn't going to ever happen or will come only "when pigs fly." Well then, here's your flying pig. Kinda cute, isn't he? : )

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