BLOODLINE: AIDS and Family

When you click on the photo for Bloodline: Aids and Family you will see a video of a mother who says:

I said, my children, you know what I have HIV. One day I will die and leave you my children. So you must be brave and look after yourselves and look after me.

www.mediastorm.org/0012.htm
“The AIDS pandemic continues to devastate sub-Saharan Africa. Two million people died from the disease in 2005 alone. Twelve million children have lost at least one parent.

The statistics are staggering.

“But we are not only talking of numbers here,” says Paddington Mazarura of Zimbabwe, a career professional infected with HIV. “We are talking of people.”

Kristen Ashburn’s BLOODLINE: AIDS and Family is the story of these men, women and their children.

Ashburn’s photographs are heartbreaking. But they also tell us of something more. They remind us of how tenuous our connection is to each other. In doing so, they show that what matters most is the care we give to those in need.”

Inspired

From NotPerfectAtAll - A blog from an early 30s woman recently diagnosed with HIV

I’ve been neglecting the blog, the gym, my hair, reading, all because of work. But on the bright side, it’ll be over and done with somehow (but how?!) less than a month from now, not work itself of course but this immensly stressful period. I know I should go see P’s family again when I am there, find the time, bring them something. It will be harder now because of the heat, less hiding possiblities.

I have thrush. That sucks and maybe is too much information but since it impacts my mood I thought I would write it here. Today I have been working on the presentation, not trying it out, just writing the damn thing (‘think “I have the opportunity to do this”, “I get to do this”; change your terminology and that will change your attitude’) jogging and meditating, did a bit of yoga, and all the time on my mind is the performance anxiety from the upcoming weeks. Why the F should I care? Surely I have walked or been pushed through the flames so many times that standing up in front of 3 different audiences (in an ascending size order) shouldn’t impact me. But it does. I think if I had to stand in front of even a 1,000 people and talk about having HIV or my life or things that I am passoinate about and wish to convince of, I wouldn’t be that nervous, but the way things are I feel as though I am just participating in a phony game, the game of science. It’s as though I am a kid again and try to make it look as if I have been doing the work when I know that I have been slacking off. In a sense, my job is robbing me of my adulthood.

I can’t write more without exposing what it is that I do completely on the net, and though my profile’s had only 131 hits so far, some of which are mine (but who’s counting) and I read somewhere that in the US alone there are as many blogs as there are AIDS orphans in Africa, I have to be cautious. I just wish something would come out of all this, this, this… ordeal. I have a lust for life, especially since I don’t know how long it’ll be (but then again, who does?). I want to do something meaningful. I am bored. But nevertheless, I want to make a good impression… Oh when will I break out of the closet, not the HIV closet exactly, but the day that I will stop thinking about wearing sleeves in public and positioning my arms hairy side up is the day that I will be free… or maybe just the day that I put pen to paper. I know I am happy now… P makes me very, extremely, outrageously happy with his cuddles and criossants and Nutella and sweet love. I don’t even mind his snoring much… I just drag myself out of bed and work and sleep during the day instead. I have a nifty new bike and I ride it around like a 10 year old boy (the one P bought me was vandalized). I am going home in April, to Venice in May. I am chubbier that I’d like and tatooed and scarred but making some kind of small reputation at work, I guess, no that is too stressful, don’t want to think about that. Being an outsider and a loner is tough, but I am used to it. I sometimes forget that I have HIV, that’s the advantage, because I am so used to piling up secrets in layers of discretion, and the most ironic thing is none of them, no amount of pain and bad sex and self destruction led to my infection. There has to be a lesson here somewhere. Just cos someone is paranoid it don’t mean they’re not being followed; just cos I was a - what exactly?- it doesn’t mean that I can’t get HIV through medical negligence. And I don’t have to pretend to be pure, cos I am not, and I don’t need to be a well-rounded, sense-making character, cos God didn’t set the scene for me that way. What I do need is to get my head out of my own butt and look at others and their real, or fictional, problems. And that is what makes me happiest. Being on the margins of involvement.

Aids Orphan Takes On The World

From Health24.com - Click here for the entire article - Adapted from an article by Vida Li Sik, in Drum, March 2007

She’s just 23 yet she’s challenged Tony Blair, been on TV with Bob Geldof and bowled over one of the world’s most influential businessmen.

Meet Sibulele Sibaca, a dynamic young woman who refused to let hardship get her down and now has the world at her feet.

By age 17 she’d lost both parents to Aids and was bitter, rebellious and heading for a life of promiscuity. Yet Sibulele – or Sibu as everyone calls her – turned things around, thanks to her go-getter attitude and a brother who sacrificed a budding soccer career to help his sister.

Handpicked by Richard Branson
Today the inspirational young woman manages Virgin Active’s Corporate Social Investment Department in South Africa, having been handpicked by Virgin boss Richard Branson himself to join his initiative in Mzansi.

She promotes various charities dealing with HIV/Aids, malaria and TB, and travels the country holding workshops and meeting investors.

‘‘I’m very passionate about what I do,’’ she says. ‘‘Helping the less fortunate and making a difference in their lives means a lot to me.’’

Petite and attractive, Sibu lives in a stylish townhouse in Midrand, Gauteng, drives a gleaming black car with personalised number plates and looks every inch the savvy young exec.

Yet she’ll easily admit she had no idea who Richard Branson was, and at first turned down his job offer. He wasn’t put off – he just said the offer would always be open if she changed her mind.

Which, fortunately, she did.

A life turned upside down
Sibu was born and raised in Langa, Cape Town, where she and her older brother, Sonwabo, enjoyed a reasonably privileged childhood. Their mother taught at a school for children with special needs and their dad was a school inspector and pastor.

Sibu loved going to work with her mom and travelling around the Western Cape with her dad on his school visits. But at age 13 her life turned upside down when her mom died after a short illness.

‘‘My father tried hard to be mom and dad all in one and he did a great job,’’ she recalls. But gradually he too became ill, and passed away in 2000. It was a terrible shock.’’

Psychologist Vanessa Feldman says the loss of both parents at such a young age is extremely traumatic to any child. “It can create deep abandonment wounds,” she says.

Sibu didn’t know what had claimed her parents until she was riding in a taxi and heard women gossiping about her father. ‘‘They said he’d died of Aids,’’ she says softly. ‘‘I was devastated.’’

Sibu confronted her brother when she got home and demanded the truth. He told her their father had confessed the cause of their mother’s death and his own illness.

‘‘I was so angry,’’ she recalls. ‘‘I beat him with my fists, cried and asked him how he could lie to me.’’

Their once happy home life was shattered. To make matters worse, there was precious little money left as their father had cashed in his insurance policies to pay for antiretrovirals (ARVs).

‘‘I hated my dad’s guts,’’ says Sibu. ‘‘I held him responsible for what happened to our mother and I even hated our family name. I rebelled and did a lot of things I’m not proud of: hanging out with boys, being promiscuous.’’

Sibu’s rebellious behaviour as a teenager may have been her way of coping with pain, says Feldman: “Teenagers are very self-conscious and peer approval is critical at that age as they try and fit in with others their age. She was probably trying to find some sense of belonging and love.” Click here to read the entire inspiring article.

African woman appointed HIV/AIDS Special Envoy for Africa

Author: Hone Liwanga

Date: 24 May 2007| from www.alaffia.com

Summary: United Nations (UN) Secretary-General Ban Ki-moon’s appointment of activist Elizabeth Mataka as the HIV/AIDS Special Envoy for Africa is an important step for gender equality in Africa, and for addressing the impact of HIV/AIDS on women. On the same day, 21 May, the General Assembly reviewed progress towards universal access to HIV prevention, treatment, care and support, and discussed the impact of HIV/AIDS on women and girls.

Botswana-born Mataka, who is currently the executive director of the Zambian National AIDS Network, takes over from Canadian Stephen Lewis, whose contract ended at the end of last year. It is exciting to note that her appointment comes barely a month after her election as vice-chair of the Board of the Global Fund to Fight AIDS, Tuberculosis and Malaria.It is clear that the fight for gender equality is yielding some much fought for results. Moon should be commended for being gender sensitive and recognising women as key partners in development. Mataka’s appointment should indeed encourage other international and national leaders to rise to the occasion and start appointing more women to key leadership positions.

Reacting to her appointment by Moon in Lusaka recently, Mataka noted that her new role brings her to the forefront of the challenges facing the continent when it comes to HIV/AIDS.

“I am overwhelmed by the magnitude and the recognition of my work at the level of the UN office. I see this appointment as an opportunity to be more effective in the service for Africa on the specific challenges confronting the continent regarding HIV/AIDS, children and women,” Mataka said.

She added, “I see myself as an advocate who will speak very strongly to leverage support to the African continent. I also see this as an opportunity to engage African leaders to see that the continent pulls support towards fighting HIV/AIDS.”

Since Africa has remained the hardest hit continent by HIV/AIDS, Mataka should use her appointment and election as vice chairperson for the Global Fund to work with all Africans to reduce prevalence rates.

UNAIDS reports that women and girls living in sub-Saharan Africa account for almost 60% of adults living with HIV. Efforts to focus on promoting equal access to care and treatment, ensur­ing universal access to education, addressing legal in­equities, reducing violence against women, and valuing women’s care work within communities, are vital to addressing fundamental gender inequalities that are fueling the epidemic.

Violence against women continues to threaten women’s health and safety, no less when it comes to HIV. According to a report produced by the Global Coalition on Women and AIDS, Studies from Rwanda, Tanzania, and South Africa indicate that the risk for HIV among women who have experienced violence may be up to three times higher than among those who have not.

During the review session, General Assembly President Sheikha Haya Rashed Al-Khalifa encouraged UN Member States to recognise the feminisation of HIV/AIDS. She noted that there are some very practical things that can be done to make a tangible difference in women’s lives.

Stephen Lewis was undoubtedly a high energy, outspoken leader, noted for his commitment to women and girls on the continent. Yet to have an African woman as Special Envoy, the first appointed from civil society, is an example for the continent.

There is no doubt that Mataka would discharge her duties as UN special HIV/AIDS special envoy for Africa diligently. A social worker by training, she is a tested leader whose 16 years working experience in HIV/AIDS related work will benefit Africa. As a policy maker and activist, she has worked with Government as well as in the private sector and non-governmental organisations.

As a personality, Mataka exhibits striking maturity and exceptional commitment in her role as a social worker. She has all that it takes to perform to the expectations of Moon and all Africans.

Heads of State in the Southern African Development Community (SADC) have affirmed their commitment to ensuring 50% representation of women in decision-making positions. This means not just ensuring that women are in leadership position in politics, put also in business, social development, and everywhere where decisions are made.

There are so many qualified women in Africa, who are denied influential positions in various sectors of societies by virtue of their gender. Such tendencies are retrogressive and inhibit development in countries. It is time to eliminate the myth of key leadership positions being solely a man’s domain and realise that women are key partners in development, so that the world can move forward.

Hone Liwanga is a journalists and member of the Gender and Media Southern Africa (GEMSA) Network in Zambia. This article is part of the Gender Links Opinion and Commentary Service that provides fresh views on everyday news.

Social network for HIV/AIDS community

March 28, 2007 | By Minic Rivera | From www.blogherald.com

HIVConnect.net, a social network for the HIV/AIDS community, was launched to serve as place of free dialogue for people with HIV/AIDS, AIDS services organizations, community based organizations, researchers, among others.

“My goal is to create an environment of comfort, and deepen the social interaction between clients and the various organizations and individuals that seek to support them,” Stephan Adelson, founder of the nonprofit project, said.

There are three types of membership available on the site. One profile type is for those that are HIV-positive, a second for organizations, and a third for friends and family members. To ensure the privacy and comfort, HIV-positive members family and friend profiles do not have access to the HIV-positive community. HIVConnect.net includes a place for member profiles while offering a comprehensive library with topics related to HIV/AIDS.

Long term survivors of HIV/AIDS are becoming isolated environments, where medication and mutations of the virus are creating distinctive responses in individuals. Their doctors often face unique situations, yet sharing these experiences is often difficult and time prohibitive. HIVConnect.net provides a place for authentic communication while ensuring the privacy of the individual. To further assure privacy, no identifying personal information such as name or address is collected.

Lifeboat: A Woman’s Guide to HIV-Positive Motherhood

Andrea Lynch, RH Reality Check, Nicaragua & England on February 26, 2007 - 8:50am

Published under: STI/HIV/AIDS Prevention | Women’s Rights

There are 19 million women worldwide currently living with HIV/AIDS, but living with HIV is just one aspect of these women's lives. Reproductive rights organizations like Ipas and HIV/AIDS advocacy organizations like the International Community of Women Living with HIV/AIDS have been working for years to raise awareness of the complexity of HIV-positive women's sexual and reproductive realities, and a new project called Lifeboat offers a unique space to challenge stereotypes about HIV-positive women's lives. Specifically, Lifeboat seeks to shed light on the reality of HIV-positive motherhood, using film to present compelling, complex images of mothers living with HIV/AIDS.

According to UNAIDS, of the 200 million women who become pregnant every year, roughly 2.5 million are HIV-positive. In some countries in southern Africa, where the pandemic is most widespread, over a third of pregnant women are living with HIV/AIDS. Across the developing world, HIV-positive women—like all women—struggle to find dignity amidst pervasive violations of their sexual and reproductive rights. And despite strong anti-discrimination laws and decades of awareness-raising, here in the United States, HIV-positive pregnant women continue to face discrimination within the health system, as Scott Swenson reported earlier this month.

The obstacles to achieving health, dignity, and well-being faced by HIV-positive women worldwide are formidable to say the least, but that is only part of these women's stories. All over the world, HIV-positive women continue to grow, live, and contribute to their communities and their families. By sharing these women's stories through short films, Lifeboat seeks to shatter the stigma and the stereotypes surrounding HIV/AIDS, sex, pregnancy, and motherhood, focusing instead on "the human experiences of wanting, having, loving, and raising children in a positive home." For example, "Lullaby" features two teenagers talking about the loving, happy childhood that their HIV-positive mother has given them. "True Love" focuses on a Nigerian couple coming to grips with the knowledge that they are both HIV-positive, and that they are expecting a child. Both films have been screened at numerous conferences on HIV/AIDS, as well as in communities and healthcare settings. They will soon be available online. For more information, visit Lifeboat.

Readers remember the early years of AIDS

Those touched by the virus share memories of the struggle and the stigma

Visit www.msnbc.msn.com/id/13148911/from/ET/for the whole article.

Behind every AIDS death is a story. Behind each statistic is a person who is loved, who was someone's brother, mother, father, sister, aunt, uncle, friend, grandparent or lover.

On the 25th anniversary of AIDS, readers share their memories. Some have survived being HIV positive for decades and recall the fear born of ignorance by those around them.

Others are left to remember those who died, from young men taken by a disease then called GRID (Gay Related Immune Deficiency) to a 58-year-old grandmother who died following heart surgery, to a daughter wondering what life might have been like if her father had lived to see her into adulthood...

Here are their memories, in their words:

This is my 25th year living with HIV/AIDS. Those early years were like living in a one-man concentration camp, with my own body as the jailer and executioner. I have held 16 men in my arms as they took their last breaths, I have been told six times that I would not live 6 months.

How do I put into words the devastation that this pandemic has racked through my life? I have been through all of the regimes of medicine, sometimes the treatment was much worse than the disease. Many of my friends have come to say goodbye to me several times. Yet I'm still alive and live well today. I have literally had to change every thought I've ever had about everything to survive. There is not enough space here to share all that HIV/AIDS has brought into my life, from the deepest grief and depression to the highest expression of my personal faith.

— Everett, Santa Monica, Calif.

As a nurse, AIDS has had a huge impact on my life. During the early years, I lost a lot of patients. I was terrified of the disease, the unknown. Over the years, I went to AIDS conferences and got a lot of education about the disease. I became an AIDS counselor and realized just how devastating and horrible this disease is.

A few years ago, a patient I had counseled who was HIV positive came into my office, shut the door and sobbed like a baby. He couldn't breathe well and he was afraid. All of a sudden, as I held him, I realized this was the worst disease the world has ever known. He has since died.

— Trunell, Amarillo, Texas

My dad was a hemophiliac who contracted HIV/AIDS through the blood products that he used to stop his bleeding. He was devastated. At that time, it was a death sentence. When he disclosed it to his co-workers he was treated like a leper. Our neighbor was so afraid of him, she had to get counseling. (She made sure to let us know this.) She came over to our house one time, stating it was an assignment from her therapist to "confront her fear," and asked me to hug and kiss my dad in front of her to prove I wasn't afraid of him. I was so angry at her and others in our community for prioritizing their fears without trying to understand our fears. My dad lived with HIV/AIDS for 12 years, and his mission was to educate people that they needn't be afraid of him. In fact, he was more afraid of them — afraid of catching colds or infections from them that could literally kill him. He passed away in 1998.

— TJ

My mother was a nurse at an Alameda County (Calif.) Hospital that had an AIDS ward in the early '80s. I was 12 when I met an AIDS patient. He came up from behind me and said, "excuse me" in a deep voice, when I turned around, I saw a very tall skeleton. This prompted a series of very open discussions on AIDS (some were still calling it GRID) and safe-sex practices. My mother told me way back then that not only gay people get AIDS like everyone was saying, that AIDS is in the blood, so anyone can get it.

Soon after, the first heterosexual came to the AIDS ward, she was a wife and a mother. The AIDS infected her brain or nervous system, something like that, and I remembering talking to her once. She kind of broke down, crying and telling me about her regrets. It was very sad and a lot for 12 or 13-year-old to take in. However, these experiences and my mothers openness insured my condom use throughout my teen years and early 20s up until I got married.

— Rick, Sisseton, S.D.

I remember the fear. My beloved cousin had come out of the closet and moved to Houston, where he contracted AIDS. At his funeral, there was a beautiful black man with blue eyes standing in the foyer with tears dripping down his face. I introduced myself and asked if he was all right. His reply? "I'm just so tired of going to funerals." I understood, a little better anyway, of the personal toll this damned disease takes on everyone who has a soul.

— Claire, Beeville, Texas

When I was 13 years old, in 1993, my father died of AIDS. This year I have lived 13 years of my life without him. I often wonder what my relationship with him would be like now, as an adult, but the memories from my childhood years with him are good ones. I told him before he died that I thought he was the bravest man I would ever know because of what he suffered. He still is.

— Lindsay
(more testimonies available in the full article)

HIV-Positive Women Activists in Latin America Stand Tall

by Diego Cevallos
MEXICO CITY, May 11 (IPS) - Patricia Pérez, an activist from Argentina who was diagnosed HIV-positive in 1986, has been nominated for the 2007 Nobel Peace Prize for her activism on behalf of women living with the AIDS virus. But her case is an exception to the rule.

Most Latin American women who contract HIV hide their status for fear of rejection, or experience veiled or open discrimination. And the number of HIV-positive women is rising sharply.

According to the United Nations Population Fund (UNFPA), three years ago there were seven or eight men with HIV/AIDS in Latin America for every woman with the virus. But today the ratio is three to one.

Pérez, the regional representative of the non-governmental International Community of Women Living with HIV/AIDS in Latin America (ICW Latina), has raised her voice, like other activists, to warn about the increasing feminisation of the AIDS pandemic.

But above all these women advocate the right of women living with HIV/AIDS to speak out freely and without fear.

"I never thought that 20 years after being diagnosed with HIV, I would be nominated for the Nobel Peace Prize. But this is a recognition of the work of all of us," said Pérez in Mexico, before a mainly female audience who applauded enthusiastically.

Pérez, who is on familiar terms with government authorities and United Nations officials, is taking part in a meeting of 25 leaders and HIV-positive women activists from several countries being held in Mexico from Tuesday to Friday.

The participants are discussing possible strategies for the 17th International AIDS Conference, which will be held in Mexico in August 2008...

Read the rest of this article at www.ipsnews.net/news.asp?idnews=37705

Tired and Alone

from http://stillarriving.blogspot.com/ - a blog about living as a young hiv positive male

Alright well I am sure you are waiting for the updates I promised you on Monday. Here they are. My viral load fell from 44,000 to 6,000 (ish) that is awesome news! On the other hand my CD4 count also fell and is holding in the low 500’s. Hopefully we will see them continue to improve over the next few months. I have to go on blood pressure medication as well. My BP was 158/90.

In Orthopedic news they are treating me for a shin splint. No leukemia. My doc does have me out of work for the month to make sure I have the full potential for recovery. Thanks to everyone who sent out happy thoughts.

Psychologically I am exhausted. I had a breakdown this morning. I am going to give you, my readers, a rare glimpse into something that I rarely show anyone (family and close friends included). I am going to give you my unedited feelings. I have a VERY VERY VERY small core group of friends. They are the one’s that kick my ass when it needs to be kicked, come and visit me when I am sick and call me to make sure that I am doing alright on a regular basis. In addition to that my Mom and I are very close as well. So for the life of me I cannot figure out why I feel alone. At this point I feel like I don’t really belong anywhere. A part of that has to do with my medical conditions I think. I am in my early (almost mid) 30’s and I have AIDS, high blood pressure, arthritis, chronic bronchitis, a shin splint, two time cancer survivor and I have almost no sex drive. I think it bothers me tremendously that I absolutely cannot relate to 99% of the people my age. I am truly scared. I hide that from everyone. Not because I am afraid of being weak but because I have always perceived as being the strong one. I have always been the caretaker and have always been the one saying that everything will be alright. I am to the point to where I almost don’t believe that anymore. At this point the only comfort I have is in the fact that I know while scared I don’t let that emotion control my life. Without regards to fear I feel that I do still continue on with my life as best as I can.

For the next two weeks my pill burden has shot up to 24 per day. After the two weeks is over it will go down to 23. I am tired of fighting. It seems all I have done for the last year and a half is continually fight this virus and between it and me, eventually it is going to win. It has come to the point to where I have to practically overdose on uppers some days to even get out of bed. Somewhere there is going to have to be a braking point because while a fighter I can only fight and do so much before I give out. I have very seriously considered just quitting taking my anti-AIDS meds and letting things take its natural course. If that meant I had 2 weeks or 20 years then so be it. I decided against that because while I am tired of fighting I love the very essences of life.

I wish you all could have known me prior to getting sick. I was a total riot. I ALWAYS had a bountiful supply of energy (natural not the kind you take), and I loved playing sports and walking in the park. Now only a small glimmer of who I was remains. On rare occasions when I look into the mirror I catch a glimpse of him. While not all, I have lost a lot of who I was. I would do anything to have my life and my body back. I am tired or being tired, tired of being sick, tired of being scared and certainly I am tired of feeling alone for no apparent reason.

South Korean Soap Opera Aims To Reduce Discrimination, Stigma Surrounding HIV

May 04, 2007
A South Korean television soap opera that aims to reduce the stigma and discrimination associated with HIV/AIDS by portraying the story of an eight-year-old, HIV-positive girl has been receiving top ratings in its time slot, the AP/San Francisco Chronicle reports. According to the AP/Chronicle, the program’s audience has been steadily increasing since its premiere in March, and last week it reached 18.5% of television viewers during its time slot, according to AGB Nielsen Media Research.

In the show, which is called “Thank You,” the girl, Lee Bom, becomes HIV-positive through a blood transfusion. When villagers discover she is HIV-positive, they pressure her, her mother and her great-grandfather to leave the village out of fear they will contract the virus. The program’s producers have said that they aim to tell the “story of violence that rises from prejudice, discrimination and stereotype.”

According to Kim Hoon-soo, executive director of the Korea Confederation for HIV/AIDS Prevention, knowledge about HIV/AIDS in the country has increased, but “discrimination and prejudice” against people living with the disease is “still very strong and widespread.” Nam Jeong-gu, a researcher at South Korea’s Centers for Disease Control and Prevention, said the program “will help greatly to improve the public’s perception of the disease.”

Many South Koreans are reluctant to receive an HIV test because of the stigma surrounding the virus, the AP/Chronicle reports. A 2005 survey conducted among 2,022 South Koreans found that 52% of respondents would not send their children to school if another student was known to be HIV-positive. The survey also found that 40% of respondents said that HIV-positive people should be quarantined in special facilities. About 3,891 South Koreans are HIV-positive, according to government statistics. According to United Nations estimates, the number could be as high as 13,000. The country in 2006 recorded 751 new HIV cases, up from 327 new cases in 2001, the AP/Chronicle reports (Bo-Mi, AP/San Francisco Chronicle, 5/2).