HIV - ReadWriteWeb http://www.readwriteweb.com/feeds/tag/HIV en Copyright 2012 Richard MacManus readwriteweb@gmail.com Tue, 14 Feb 2012 07:05:06 -0800 http://www.sixapart.com/movabletype/?v=4.35-en http://blogs.law.harvard.edu/tech/rss Positively Social: Blogging & Tweeting with AIDS/HIV Through the bravery and efforts of people such as our good friend Drew Olanoff and the LIVESTRONG campaign, many social media users are much more aware of cancer and what this disease does to the body, mind, soul and community.

Today, on World AIDS Day, we'd like to direct your attention to a few folks on the social web who are facing lives with HIV/AIDS and have made the same brave choice to share that experience with the rest of us. Read on for bits and pieces of their stories as well as feeds and lists that will keep their struggles and triumphs in your thoughts.

]]> Shawn Decker's ShawnandGwenn.com

Decker, who is a public speaker educator and advocate, blogs with girlfriend Gwenn Barringer about his own struggles with the virus and the challenges of being in an HIV-asymmetrical couple.

With the success I've had keeping my numbers stable, I broached the topic of trying one week on, two weeks off meds...

My reason for wanting a longer break has been absent-mindedness and lethargy... It's especially frustrating on the days when things just aren't clicking in the old nugget; like when I wake up feeling exhausted instead of rested or, in the middle of a shower, I wonder if I've already washed my hair or not. This tends to happen after a couple of days on meds.

Steve Schalchlin's Bonus Round

Schalchlin is one of the first HIV/AIDS bloggers, beginning his blog in 1996. Also a songwriter, Schalchlin put his story into music that his partner, playwright Jim Brochu, turned into The Last Session, a musical about a man's struggle with AIDS.

In Flash Forward, some of the characters are saying, "The future saved me."

I remember when I could see my future. And like this character, there was a certain comfort in knowing I had only just so much time and no more. I'm reminded of the old Chinese saying about how a child who dies has the longest life and an old man, the shortest.

I know that that state of mind, of perfect freedom, is available. I know it is because it's only a state of mind. Having gone there, I know what it feels and tastes and smells like. The question is whether I have to know when I'm gonna die to get there again.

Kenn Chaplin's My Journey With AIDS

Chaplin is a blogger who faces AIDS and is a survivor of childhood and adult trauma and adult-diagnosed mental illness.

When diagnosed with HIV in 1989, and AIDS a few years later, it was suggested that I probably had a maximum of ten years to live. In fact I did nearly die of cryptospoidiosis which my doctor still talks about with a sense of marvel. It only seemed logical that I should accept the reality, with countless friends dying around me, and try to live into death with as much grace as I could muster. What I asserted was realism some friends took to be pessimism. One I think of in particular eventually drifted away as, it seems to me, she could neither tolerate what I believed to be reasonable thoughts of dying nor the fact that my health was, to her, no longer of imminent concern.

James McLarty-Lopez's Still Arriving

McLarty-Lopez is a young, recently married gay man. His blog references medications he takes, side effects he experiences and his general feelings about this part of his life.

Chad and I last night were discussing Justin's passing. While very sad it was only a matter of time... I have been tired many times. I have been weak many times. However, through the times in the valley I have always said "I want to live." In comparison, Justin too said he wanted to live, the difference being, he waited far too late to make that decision. He was only 24 and ravaged with HIV and AIDS defining illnesses. Who knows why Justin never really sought treatment? Perhaps the stigma of having HIV stopped him. Perhaps he just didn't want to have to acknowledge the fact he had it. The only person who could have answered that is gone. Speculation will neither ease the pain nor bring him back. Now it's about remembering his smile and moving on with the lesson of I want to live.

To subscribe to a 12-blog feed of blogs from folks living with and writing about HIV/AIDS, click here.

Also, we've put together a Twitter list of people who live with HIV/AIDS and people who medically treat, advocate for and work with HIV/AIDS sufferers.

What better way to observe World AIDS Day than by actually reading the words and understanding the challenges of those who actually live with AIDS or HIV and are unashamed and courageous enough to share those stories with us?

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http://www.readwriteweb.com/archives/positive_social_blogging_tweeting_with_aidshiv.php http://www.readwriteweb.com/archives/positive_social_blogging_tweeting_with_aidshiv.php NYT Tue, 01 Dec 2009 19:35:57 -0800 Jolie O'Dell
Project Masiluleke Takes On AIDS With Mobile Messaging Praekelt150.jpgCan mobile phones be an effective tool in the fight against AIDS? A new group of organizations believe they can.

Last week, in conjunction with the PopTech! conference, the Praekelt Foundation and partner organizations announced a new effort that will use the power of mobile messaging to help fight HIV/AIDS and tuberculosis in South Africa. Project Masiluleke will utilize the power of the mobile phones as a low-cost way to deliver health-related information and prompt call-ins to call centers for those affected by these health care crises.

]]> This is a guest post written by Jason Harris, a mobile writer and enthusiast. To follow him further, read his blog.

As discussed here and elsewhere before, South Africa is a country with an amazingly high mobile phone adoption rate - around 90%. Unfortunately, South Africa is also a country that has around 1000 HIV/AIDS related deaths ever day. Project Masiluleke, which means "to give wise council" or "lend a helping hand" in Zulu, aims to use the mobile phone as a communication conduit between doctor's visits. The project's intent is to bring those with HIV and TB into the healthcare system earlier, when the diseases can be most effectively treated and/or slowed.

Project M, as it's being called, consists of four major components.

Drawing Perspective Patients In

First, the team behind Project M will use "Please Call Me" (PCM) messages to prompt citizens to call into a HIV/AIDS call center. Trained call center operators will provide healthcare information, counseling, and referrals to local testing clinics. Please Call Me messages are a wildly-popular SMS-like message that prompt a party to call the requesting party. PCM messages are used heavily in South Africa, roughly 25 million PCM messages are sent every day. PCM messages will be adapted by the Project M team to deliver advertisements prompting recipients to call into HIV/AIDS call centers if they are in need of health-related resources.

In the second part of the project, the Project M team will use TxtAlert, a text messaging reminder system developed by Praekelt Foundation, to send out SMS messages to remind patients of upcoming clinic visits. As it stands, only 10% of South Africans with AIDS are actively receiving anti-retroviral therapy. TxtAlert will help remind patients who are enrolled in these therapy programs to attend their visits, enhancing their care.

Reaching Out, Mobily

As a third part of Project M, a virtual call center will be initiated and built. Existing AIDS/HIV helplines will be enhanced by using teams of highly trained and committed HIV+ patients. This group of peer counselors will be made up of "gold star" patients who are knowledgeable about their about their illness and are committed to providing high-quality advice and guidance to those who are dealing with the emotional weight of an HIV diagnosis. The peer counselors will be selected and trained by NGO and government officials.

The virtual call center counselors will be available via mobile phone and will field questions remotely. Not only will the virtual call center create thousands of jobs, but those who call into the call center will be connected with a nurturing voice to help console and distribute quality information.

The fourth and final piece of Project M involves at-home HIV testing with mobile support. Unfortunately, with such a high population of HIV infected persons, the South African healthcare system isn't fully capable of handle the tremendous load. Also, South Africans who may be HIV positive avoid the lines to get tested because of the stigma of being seen in line.

To help battle this, the Project M team will employ mobile testing stations that can conduct the blood test in one's home, giving them privacy. Trained councilors will also be on hand to administer guidance and advice in case it is needed. The concept of an at-home test has been well received by the South African government and healthcare officials. A mobile testing solution would be welcome in rural areas where the testing resources are most needed.

Lots of Players Involved

The team behind Project M is made up of various organizations including businesses, NGOs and government agencies. The major players include the Praekelt Foundation, mobile network operator MTN, design firm frog design, National Geographic, and NGOs such as LifeLine Southern African and World-Class Advisors.

So Much At Stake

There is no doubt that the mobile phone represents a huge opportunity to disseminate information to huge groups of people quickly and cheaply. It is refreshing to see so many organizations involved with Project M including mobile network operators, mobile technology firms, NGOs and government officials, all united to help potential victims of dreaded diseases.

This time of effort and coordination, if applied to more social causes, would bring tangible change in many areas of need. We send kudos to Project Masiluleke and we will continue to track the progress of the project on an ongoing basis.

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http://www.readwriteweb.com/archives/project_masiluleke_takes_on_ai.php http://www.readwriteweb.com/archives/project_masiluleke_takes_on_ai.php Mobile Mon, 03 Nov 2008 09:00:29 -0800 Jason Harris