Putting a Face to a Disease

So today I went to the Infected Men's Panel. Since I had never really spoken to someone with HIV or AIDS in person, it was a whole new experience. After being in this class for several months, I have seen, heard, and read about people's tragic struggle with this disease. But being able to actually see a person in the flesh that is dealing with this everyday was sort of surreal. Every person on the panel had a different story to tell. No matter how they were living their lives today, it definitely once again made me realize how lucky I am to be healthy.
A lot of the topic that came up during the discussion dealt with medication. I could relate in a very, very small way because I had to complete an M&M simulation of "pretend" drugs. I am completely aware that eating candy is in no way close to the real thing of taking serious medications. But I can somewhat understand the hardship of having to take certain medications at certain times of the day. It seemed like I couldn't even function day to day because I was so worried about missing a pill. That was just one of the terrible things that come along with having the disease and I am so grateful that those individuals came in to speak to us today. I only hope that I can meet more people as brave as them in the future.

Also, the more and more that I learn about children with HIV/AIDS, the more I learn that a lot of them are not getting the help that they need. There is HIV treatment for children that can help slow the disease and prolong their lives. Unfortunately, a statistic recently showed that around 62% children with HIV/AIDS are not receiving this treatment. How can we expect a change and hope for the future if that number is so high. There has to be a better way to help these children, and I hope that this will change in the future. http://www.avert.org/children.htm

Wow

So once again I was taking to my mom about HIV and how this class is making me always think about it. This week she told me about one of her friends that had died from AIDS. The strangest thing was that I knew this person too all growing up but my parents had never explained to me how he had passed away. He was around 40 and married with a little boy. But he also had a secret life. He was a bisexual man and also had a boyfriend on the side. He had contracted HIV from his secret boyfriend, which eventually turned to AIDS and took his life. He was very close with my parents and I remember them being very sad about it for a long time. I was only around 10 when he died so I wonder if that's why my parents never told me. It makes me wonder, what is a good age to tell children about HIV/AIDS and what it can do?

Also, there are so many different organizations that can help children with AIDS. I have been trying to post new organizations over the past few weeks but it is still amazing to me that there are so many people out there that want to help. This week I wanted to share the link for the Children Affected by AIDS Foundation. The foundation basically provides money for all different sorts of causes that can help these children. Some things that they provide money for include basic necessities, health therapies, social and recreational needs, and family recreational activities. http://www.caaf4kids.org/

Wondering...

So this week I went to Disney!!! Disney is my favorite place in the whole world and I was so excited that I decided to go. One of the things I love most about it is the possibility of people watching. While waiting in ridiculously long lines it is always fun to observe people and their families and just kind of wonder about them. I always try to guess where they're from and little things like that. But I obviously know that this class has changed me because now instead of wondering basic things about them, I wonder who out of all of these people has HIV. If you think about it, it is really, really statistically possible that there were people there that were HIV positive on the same day that I was. It just really made me wonder and just be a lot more aware of what was going on around me. It also made me a little scared because now I am so paranoid about contracting HIV myself that I imagined this whole scenario where I simply bumped into someone and for some reason we exchanged blood and now I had HIV. I know that it was a ridiculous thought of mine but it still really scares me. I think the most important thing that Ihave gotten out of this class so far is to just be thankful for my life so far. I need to be thankful that I am healthy and am now equipped with lots of knowledge on how to keep myself that way.

Also, I learned about a great organization that I wanted to post on here that deals with children with AIDS. It is called the Children with AIDS Project and they work very hard to try and provide foster care and parent services for children who suffer from HIV/AIDs. The link to the website is http://www.aidskids.org/. Check it out!

New Friends

So a few weeks ago when I went to get my test results back from Miracle of Love, I made a new friend. I showed up to the clinic at around 1:03 pm only to find that the office doesn't do test results from 1-2 pm. Fantastic right. So as I'm sitting there waiting for what seemed like forever because they kept playing really depressing AIDS videos over and over, I noticed there was a kid around my age sitting right next to me. He was shaking and he looked like he was about to cry. I was going to just mind my own business when he said hi to me. We started talking and he was waiting on his boyfriend to get his test results back. He told me that he had been there for hours and that he was so incredibly worried. He feared that if his boyfriend came back HIV positive, than that would mean that he was positive too. I tried to just sit there and listen to him vent and I found out that he was actually a really cool person. We both went to the same school and were around the same age. We seemed to have a lot in common and it just seemed weird to meet in such a random place. It really made me put myself in someone else's thoughts for awhile. I was pretty positive that I was HIV negative before I got my results, but this kid's whole life could have been changed for him in the matter of hours. Luckily, him and his boyfriend were both negative! But it still made me wonder what if? Just seeing him throw the idea around in his mind and remembering the expression on his face was enough to really scare me. It made me want to be even more careful with the decisions that I am making and just be a lot more aware of my surroundings including the people in them.

Also, did you know that with children with HIV/AIDS their symptoms usually occur very early on. According to the US Department of Health and Human Services, about 20 percent of children develop serious disease in the first year of life. Also, most of these children also die by the age of four. This statistic both shocked and saddened me. I just can't understand how an innocent life can be over before they even reach kindergarten. =(

Close to home

So yesterday I took a little day trip home to see my parents. I haven't seen them in a while so of course they wanted to know how school was going. I told them about how this class has been a little challenging because it is a lot of work but I am very glad that I am taking it. She didn't even know that there was an "HIV" class that you could take. So we started taking and she had an interesting story to tell me. It was about one of my neighbors who had lived by me my entire life. My mom told me that during the 80's, my neighbor, lets call her Pat, and her husband Bob, had been living happily together. Bob needed to have some surgery for something minor but other than that was relatively healthy. When he went in for his surgery he was given a blood transfusion. During this time, blood wasn't checked as rigorously as it is today and Bob was given HIV positive blood. He eventually got AIDS and died. Pat was of course devastated and she had to raise two twin boys all by herself. There was a big lawsuit between Pat and the hospital and Pat was given a big settlement to make sure that she wouldn't have to worry about money for the rest of her life. But I know that money doesn't replace losing someone that you love.

When my mom told me this story I was so shocked! I had heard about things like this happening but I had no idea that it has happened to someone that I had known my whole life. It was such a terrible story and it really made me appreciate how lucky I am.

On a different note, I am still finding some surprising and rather sad facts about children with HIV. I was looking on the AVERT website and I saw that in many poor countries, both children and their parents have HIV. This puts a lot of pressure on the children and in many cases, the children end up taking care of their parents. Even if the child doesn't have HIV but his/her parents do, that child basically becomes the bread winner for their entire family and has to work to support them. Many of these children eventually become orphans.

http://www.avert.org/children.htm#

Getting Tested

So a few weeks ago I had to get tested for HIV and so this week I decided to write about it. I went to a place called Miracle of Love that is located in downtown Orlando. My first attempt to get tested ended badly. My GPS tried to sabotage me and ended up taking me in the complete wrong direction. I ended up driving around Orlando for almost two hours and by the time I finally found the right place, they were closed. Just my luck! So my first experience with getting tested had already start badly. The next day I went back (this time I knew exactly where to go), and was very apprehensive about it. I wasn't worried about the results that I would get, but just being in the office waiting for my turn to get tested I felt kind of dirty. I am not trying to be offensive to anyone, but for some reason when I was in there, I felt like the employees there were judging me. I thought that they thought I was some sort of bad person who did bad things so that I needed to be tested. This was COMPLETELY false. As soon as I met the person who administered my test, I felt so comfortable. She was so nonjudgemental that it make me relax immediately. The test was so easy! No blood drawn or anything! I just had to swab the insides of my mouth. I am definitely glad that I took the test.

Also, I have been continuing my research on HIV and children. This week I learned that HIV can be transferred to children through breastfeeding. This occurs in approximatley 10-14% of mothers who have chronic HIV. I also found that in many developing countries, around one third of all HIV transmissions are caused by breastfeeding. I found all of this information from the National Institute of Allergy and Infection Diseases. http://www.niaid.nih.gov/factsheets/hivchildren.htm

Also, I looked into HIV confidentiality laws in another country. The country I chose to research was Ireland. I found that in 1969, Northern Ireland put in place a Census Act that is used to protect all of its citizens and to ensure confidentiality. Information is only used for statistical uses only. They take confidentiality very seriously and it is a criminal defense to breach their confidentialty agreement. http://www.nisranew.nisra.gov.uk/CENSUS/data-confidentiality-security.htm

Shock

So this week I watched a movie/documentary titled Silverlake Life: The View From Here. It follows the lives of two gay men that have been together for over twenty years and both of them have AIDS. The film basically follows them on their everyday life and shows how each day their health is deteriorating. I have been reading about what HIV/AIDS does to your body but to actually see it happening to a person is a completely different feeling. I was horrified and saddened at the same time but couldn't stop watching. Towards the end of the film, the camera basically shows one of the characters on their deathbed. Each day he looks worse and worse and the life seems to be leaving him each second. I knew that he was going to pass away but I didn't think that it would be as terrible as it was. The camera shows him almost up to this last breath and shows his dead, lifeless body for over a minute just laying there with his eyes open. I was so disturbed that I couldn't even look at the screen anymore and I even started tearing up because it was so emotional. After his death, they show his emaciated body that is basically nothing but a skeleton. When the film was over, I couldn't move. I just sat in my chair and stared at the screen. I was so upset by this and couldn't believe that this is actually how people die from AIDS. I had no idea how horrendous it really was. Even now, I can't stop picturing his dead body and I feel sick everytime I do. I just can't shake that image from my head and I really don't know to do about it.

On a lighter note, I read about what a great job UNICEF is doing to help children with HIV/AIDS. They started a campaign called Unite for Children, Unite Against AIDS.