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Author Topic: Newly Diagnosed (video series)  (Read 7733 times)

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Offline awakening

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Newly Diagnosed (video series)
« on: December 29, 2016, 10:58:47 pm »
I came across this article and the related videos one sleepless night. I found Jennifer's openness and desire to educate others inspiring. Though you might not agree with everything she says, her self-made videos could be helpful for anyone recently diagnosed to be able to see and hear a real person who has recently gone through a similar experience and to have hope for the future. May be of particular interest to women, people with children, but truly I believe anyone living with HIV will find connections.

Quote
I'm a 45-year-old single mother of 3 and on 2/15/16 I found out that I had HIV. This is my story about how I contracted it, how I survived AIDS and how I live my life today with HIV.

The article:
http://www.thebody.com/content/79101/newly-diagnosed-with-hiv-jennifer-vaughan-rises-to.html

Her YouTube playlist of 19 videos:
https://www.youtube.com/watch?v=XsuHCOmYJxc&list=PLUt-daRIUzhc-8mZhUGJ-bzQZDRxZ_-Rv
~~~~
[month/date/year]
3/1/16: Tested neg (Oral swab)
6/17/16: Diagnosed poz (finger prick), confirmed w/Multispot assay
6/17/16: VL 22,900, CD4 - 524 cells/uL (30%)
7/2/16: Started Triumeq (DTG+ABC+3TC)
8/1/16: VL 30
10/4/16: VL <20, CD4 - 630 (31%)
1/4/17: VL 90
2/7/17: Undetected
4/17/17: Undetected, CD4 - 695 (33%)
7/20/17: VL 75
8/21/17: VL <20
11/27/17: VL<20
3/26/18: VL<20, CD4 - 701 (36%)
5/14/18: Switch to Juluca (DTG+RPV)
6/11/18: VL<20
7/25/18: Undetected, CD4 - 632 (38%)
1/22/19: VL<20

Offline CaveyUK

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Re: Newly Diagnosed (video series)
« Reply #1 on: December 30, 2016, 04:42:27 am »
They are very good videos. Just remember that some of the stuff she says in the early ones, she refutes in subsequent ones after discussion with her doctor (especially stuff relating to the cure being around the corner).

Have a lot of time for her and putting herself 'out there', as I do for anyone doing the same.
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Offline Jim Allen

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Re: Newly Diagnosed (video series)
« Reply #2 on: December 30, 2016, 05:02:52 am »
Seeing more and more YouTube vids of what I call "dairy" posts like this one.

Indeed a lot of inaccuracies and newbie fears, including transmission concerns and "what if's" when there simply is none.

I think for me the video's really reaffirm my belief that 1-2-1 peer support from someone living with HIV on hand in the clinics would greatly benefit newly diagnosed, and  peer support groups by the NGO's following diagnosis would also benefit a lot of newly diagnosed people. Of course it would not a replacement of the clinic's work or if needed professional counseling for some.

Jim
« Last Edit: December 30, 2016, 05:18:34 am by JimDublin »
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Offline CaveyUK

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Re: Newly Diagnosed (video series)
« Reply #3 on: December 30, 2016, 05:22:00 am »
Seeing more and more YouTube vids of what I call "dairy" posts like this one.

Indeed a lot of inaccuracies and newbie fears.

Jim

You need to watch the second/third, where they are cleared up. I actually thought it pretty inspirational, especially if you were a young woman dealing with the diagnosis. It was highlighted some time ago on the Terrence Higgins site.

Again though - and I've mentioned this before - but this really isn't 'Activism' is it? It's a video diary about someone living with HIV, and someone who fits a less common demographic. Burying it in a forum focused on work pushing for political or social change isn't quite correct is it? Is it the video format, rather than written format, that deems it 'Activism'? Honest question...

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Offline Jim Allen

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Re: Newly Diagnosed (video series)
« Reply #4 on: December 30, 2016, 05:31:48 am »
A video and posting bringing HIV into public media and view is just fine here.  Anyhow a mod decision is not up for public debate.

Now about the content look by the 3rd one it makes a bit more sense, and fair enough I did not say anything negative about her person, she like many others who are brave enough to speak openly in public about HIV is great.

However inaccuracies and newbie fears, including transmission concerns and "what if's" when there simply is none has now gotten 203,164 views and to me this video and some of her other points just really reaffirm to me that education and post diagnosis support is generally lacking.

Jim


« Last Edit: December 30, 2016, 05:43:02 am by JimDublin »
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Offline CaveyUK

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Re: Newly Diagnosed (video series)
« Reply #5 on: December 30, 2016, 06:25:59 am »
[deleted]

« Last Edit: December 30, 2016, 06:31:16 am by CaveyUK »
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Offline Jim Allen

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Re: Newly Diagnosed (video series)
« Reply #6 on: December 30, 2016, 06:34:16 am »
Yeah difference of opinion.

I thinks its brave but to me the inaccuracies, transmission fears and "what if's" just highlight to me she could have had better education and support at diagnosis.

My bigger concern is with the system of care for newly diagnosed I think we can and should so better in post diagnosis in terms of support and it would benefit and help people instead of leaving them to figure it our or walk around with concerns they should not have.

Jim
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Offline Jim Allen

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Re: Newly Diagnosed (video series)
« Reply #7 on: December 30, 2016, 06:44:11 am »
[deleted]

Yeah I already replied to the deleted post but not in full mind you.

Now I admit each admin past and present has have their own "style" or items they are picky about, however I feel I am very open towards debate even heated debate. We disagree on this topic about the lady's videos and that discussion is fine, happy to have it with you. :)

However what is not open for debate is moderator decisions and I am simply not going to debate each time when I move a post or we as a joint moderator team make a decision on an item for the good order of the forum. Its that simple.

Now if you have an issue with my decision or one from any of the moderators use the report to moderator feature and you're concerns will be considered. If you choose to send a moderator report, please know that the reports are strictly confidential and only seen by the moderators. If you wish to have feedback on any report you send, please say so in the report.

Jim
« Last Edit: December 30, 2016, 06:49:03 am by JimDublin »
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Offline CaveyUK

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Re: Newly Diagnosed (video series)
« Reply #8 on: December 30, 2016, 07:04:53 am »
That's fine Jim.

As I said in my PM, I don't intend to be critical of your moderation activities.

If I may make a humble suggestion whenever the administration team next discuss such things, it may be to rename this sub-forum - perhaps 'Activism and Media' or 'HIV in the Media' or something similar... that would probably avoid any confusion and also potentially make the sub-forum a logical home for any such 'video diary' links in the future. It's a minor thing and I don't need to debate it now - just consider it for future perhaps?




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Offline awakening

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Re: Newly Diagnosed (video series)
« Reply #9 on: December 30, 2016, 08:21:09 am »
For whatever reason it hadn't occurred to me to look to YouTube as a source of peer support. After finding Jennifer's video series I started checking out the other bloggers that show up as suggestions in the sidebar and the are many others.

Reading the peer stories here in the forum has been super helpful, but there's something about seeing and hearing a real person tell their story that opens up additional opportunities to make connections between your experience and the blogger. For me, as a 48 year old with two kids, watching Jennifer's videos helped me feel more accepting and optimistic about my situation than anything I had read. Perusing YouTube is more like being in a support group where others are sharing their stories.

Yes, Jennifer goes through a learning process and we see her newbie fears and hear her state some inaccuracies (which she clears up in later videos as she learns more herself). But that's what makes it so real. We all go through the process of dealing with fears early on and misconceptions as we try to put all the pieces of the puzzle together. It takes time to straighten all of these things out and we see that captured on camera. Seeing her go through this learning process was in large part what was so inspirational and powerful for me. Had she known all her facts from square one, her video would have been more of a scripted public service announcement about HIV/AIDS and not the personal testimonial it was meant to be.

Others have different ways of coming to terms with their diagnosis. The more perspectives we are able to see and learn about, the more options we have for ourselves in getting to a place of peace, acceptance and optimism for the future.
~~~~
[month/date/year]
3/1/16: Tested neg (Oral swab)
6/17/16: Diagnosed poz (finger prick), confirmed w/Multispot assay
6/17/16: VL 22,900, CD4 - 524 cells/uL (30%)
7/2/16: Started Triumeq (DTG+ABC+3TC)
8/1/16: VL 30
10/4/16: VL <20, CD4 - 630 (31%)
1/4/17: VL 90
2/7/17: Undetected
4/17/17: Undetected, CD4 - 695 (33%)
7/20/17: VL 75
8/21/17: VL <20
11/27/17: VL<20
3/26/18: VL<20, CD4 - 701 (36%)
5/14/18: Switch to Juluca (DTG+RPV)
6/11/18: VL<20
7/25/18: Undetected, CD4 - 632 (38%)
1/22/19: VL<20

Offline Jim Allen

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Re: Newly Diagnosed (video series)
« Reply #10 on: December 30, 2016, 10:06:25 am »
Yeah look i agree, Sharing stories is good so no disagreement from me on that one, having a lack of inital support and being left uneducated and with concerns and inaccurate info is something we can do better on as some of it is just unneeded stress and worry and can be avoided and has in general lead to people doing more harm to themselves and others.

Jim
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Offline DANIELtakashi

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Re: Newly Diagnosed (video series)
« Reply #11 on: December 31, 2016, 04:40:05 am »
Hi,

I understand the opinions on both sides.
It is lacking in accuracies and that is something the blogger should learn more about.
Plus support for newly diagnosed people is what we expect.
One thing l was encouraged by is the fact that Jennifer was down with PCP,  looking in the photos as sick as l was three years ago, but she is now back at work as a PE teacher.

« Last Edit: December 31, 2016, 04:54:16 am by DANIELtakashi »
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Offline DANIELtakashi

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Re: Newly Diagnosed (video series)
« Reply #12 on: February 15, 2017, 07:08:46 pm »
I have just watched Jennifer Vaughan's latest video.
Toward the end, she says that her doctor had told her there would be a cure in five years.
I just wonder what the foundation of that doctor 's idea is and if it is fair to tell such to a patient?
Sorry l am really sensitive about the discussion of a cure and tend to overreact.
The title of the youtube video is " l have an exciting announcement.
« Last Edit: February 15, 2017, 07:19:00 pm by DANIELtakashi »
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Offline Jim Allen

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Re: Newly Diagnosed (video series)
« Reply #13 on: February 16, 2017, 01:59:29 am »
No its not fair and its not fair to tell people to hope for a cure.
We keep hearing this news of 2 years/5 years its rubbish, well its been some of the longest lasting 5 years in human history.

Not only that its statements of cures that in my experience I have seen and witnessed causes people to go off meds, or delay treatment hoping for this cure with damage to their health as a result and other people to take risks or misunderstand that HIV is not concern.

I have a functional cure right now, in the format I take a pill a day and move on with my life.
Jennifer Vaughan is a newbie perhaps her doctor was trying to make her fee better, anyhow bad message to put out if you ask me the the reasons I gave,  but if you want to know the details than ask her maybe she will answer.

Jim

 
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Offline DANIELtakashi

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Re: Newly Diagnosed (video series)
« Reply #14 on: February 16, 2017, 02:13:42 am »
Jim,

Thank you.
A friend of mine got back from Dublin this week.  He brought me lots of newspapers from there.
Now l am lost in reading them.
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Offline Jim Allen

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Re: Newly Diagnosed (video series)
« Reply #15 on: February 16, 2017, 02:38:41 am »
lol

Newspapers from Dublin, depressing misinformation and sensationalism.
.... Perhaps it has something in common with youtube after all.

Jim
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Offline CaveyUK

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Re: Newly Diagnosed (video series)
« Reply #16 on: February 17, 2017, 09:28:01 am »
I have just watched Jennifer Vaughan's latest video.
Toward the end, she says that her doctor had told her there would be a cure in five years.
I just wonder what the foundation of that doctor 's idea is and if it is fair to tell such to a patient?
Sorry l am really sensitive about the discussion of a cure and tend to overreact.
The title of the youtube video is " l have an exciting announcement.

Just watched it and couldn't hear the thing about 5 years (only listened to the 2nd half). She talks about injectibles being available in the next two years, and says she will continue supporting others until there is a cure, but couldn't hear anything else. The 'exciting announcement' she makes is about her new website.

In her first video she mentions her doctor mentioning this (the 5yr thing), but in the second (I think) she states that it wasn't correct.

I wonder if the video has subsequently been edited. There is a TON of editing going on in the latest one.
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Offline Jim Allen

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Re: Newly Diagnosed (video series)
« Reply #17 on: February 17, 2017, 11:02:16 am »
I would never condone any violence however must admit to personally having had to control my urges to slap people in the past who claim cures are on the horizon.

The cure claims get on my tits at times, even worse are the people who repeat it just because some guy in a white jacket said it to them, the "My doc said xyz" groups.   

Anyhow on topic Jennifer Vaughan getting a new website, makes sense to have an own site, wonder if the hosting of the videos will still be through YouTube, can't imagine dropping the channel as its has traffic now. 

 
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Offline leatherman

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Re: Newly Diagnosed (video series)
« Reply #18 on: February 17, 2017, 12:13:02 pm »
No its not fair and its not fair to tell people to hope for a cure.
We keep hearing this news of 2 years/5 years its rubbish, well its been some of the longest lasting 5 years in human history.
LOL  ;D

for 30 yrs I've been hearing the cure will be here within the next 10 years; but just like my doctor telling me every 6 wks for 10 years that I probably only had 3 months to live, I don't believe anyone when they are trying to predict the future. ;)

I personally think there will never be a cure.... well not until the science is good enough to cure all cancers - by then hopefully they'll be able to deal with retroviruses. But a functional "cure" of daily meds, or especially for a long-term medication (injectable or otherwise), is certainly nothing to sneeze about :D
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Offline CaveyUK

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Re: Newly Diagnosed (video series)
« Reply #19 on: February 18, 2017, 03:52:01 pm »
I agree re the cure likely never coming, or at least not in the form that most would consider a 'cure' (ie. never taking meds, testing HIV-). I can see us getting to a point where a long-lasting injectable (say once every six months) will be with us, but whilst folk who have high blood pressure, cancer, diabetes, mental health issues, arthritis, angina..(a huge list) still have to take daily medication to keep things under control, I don't think we will see anything that negates it for controlling HIV - which in many ways is comparatively benign compared to some of those conditions anyway nowadays!

I've said it before, but I'm really not that bothered about a cure. What I really want is some development of ARV treatment that will nail the chronic inflammation issue, as that seems to be the one thing standing between us and having zero future worries about the virus having any impact in later life. Now THAT I could buy into.

But I do see how newly diagnosed folk, especially those feeling stigma, cling onto hope for a near-future cure - and for every person who is discouraged from taking meds on the off-chance one is found, there are probably just as many who are encouraged to test on the basis that they want to be around when it is!

We spend a lot of time telling people to listen to the professionals, and putting a huge amount of weight onto science and fact, so the real issue isn't people repeating some nonsense their doctor tells them, but that the doctors are saying it in the first place.

All doctors need to do is talk about 'normal lifespan' and minimal if any side effects of treatment, and how the drugs are getting better every year. There is no need to venture into 'cure' territory other than to say it is the end goal.

I've actually emailed Jennifer to point out the pitfalls of talking about 'cures' and how the emphasis should remain on the current regimens being practically a functional cure already. Whether she reads it or not is another matter...

I'm kinda surprised that someone who is tech savvy and fairly recently diagnosed, isn't already a member on this forum. Perhaps she is. Either way, I like what she is doing and think her videos will bring comfort to many people, especially women. She just needs to avoid throwing any false hope in there along with the genuine optimistic stuff :)
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Offline DANIELtakashi

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Re: Newly Diagnosed (video series)
« Reply #20 on: February 18, 2017, 05:33:12 pm »
Jim, Cavey, leatherman,

Sorry l was confused with another video of hers.
In the other one, she says that her doctor having talked about a cure in five years.
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Offline Jim Allen

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Re: Newly Diagnosed (video series)
« Reply #21 on: February 18, 2017, 06:34:39 pm »
 :)

Quote
We spend a lot of time telling people to listen to the professionals, and putting a huge amount of weight onto science and fact, so the real issue isn't people repeating some nonsense their doctor tells them, but that the doctors are saying it in the first place.

I think this could be a topic on its own or at least I know I could talk about it on its own.  Yes people should work and build a relationship with their doctors, nurses and pharmacists but no we should as patients not just believe them blindly and we should remain critical, question, ask, investigate and at times get 2nd opinions. I know I have told a few people flat-out to get a new doctor.

Quote
All doctors need to do is talk about 'normal lifespan' and minimal if any side effects of treatment, and how the drugs are getting better every year. There is no need to venture into 'cure' territory other than to say it is the end goal

Indeed but doctors are human too and probably don't always anticipate how that cure word rings through the brain of the patient like a bad echo - lol

Quote
and for every person who is discouraged from taking meds on the off-chance one is found, there are probably just as many who are encouraged to test on the basis that they want to be around when it is!

I truly don't believe its equals out at all. I spend time talking to young people who are taking risks believing that HIV is a thing of the past or that it was cured and than professionals my own age who still think that either they are tested when they are in hospital for other things or my favorite "doc's checked my bloods for WBC count or xx reason"" and they incorrectly think HIV tests are included when they are not, etc etc ect.

Every piece of incorrect information is damaging, causing people to take risks, not test, think they are tested and it all undermines the efforts to drive down infection rates.

Quote
Jim, Cavey, leatherman,

Sorry l was confused with another video of hers.
In the other one, she says that her doctor having talked about a cure in five years.

Back on topic that's okay.

Ill tell you what leave this with me and ill come back to you with a solution in mid- march, I mean it trust me  ;)

Jim 
« Last Edit: February 18, 2017, 06:45:24 pm by JimDublin »
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Offline CaveyUK

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Re: Newly Diagnosed (video series)
« Reply #22 on: February 19, 2017, 06:10:44 am »
I truly don't believe its equals out at all. I spend time talking to young people who are taking risks believing that HIV is a thing of the past or that it was cured and than professionals my own age who still think that either they are tested when they are in hospital for other things or my favorite "doc's checked my bloods for WBC count or xx reason"" and they incorrectly think HIV tests are included when they are not, etc etc ect.


I think that's two different things. One is the assumption that it's 'cured' or 'nearly cured' and therefore testing isn't important. I grant you that is an issue. The other is the ignorance about HIV being covered via routine bloods. I admit I fell into this trap a bit myself in the past - either assuming that bloods taken would check for nasties like HIV, or actively avoiding routine bloods in case something like this showed up.

For me, the decision to finally test was driven very much by the progress I could see had been made with treatment and outlook. When things were less rosy, I had very much a 'head in the sand' attitude to it all...hoping I would be fine, rationalising that any symptom wouldn't be HIV, only willing to find out when all other possibilities were exhausted. For me, knowing that a positive diagnosis could mean a normal lifespan and meds that were easier to take than every before and without very obvious side effects, certainly helped my decision to test.

I realise I may not be typical, and I'm sure if I belonged to a high-risk grouping and/or lived in an area of high prevalence then that may have been different, but I do think that the positive 'no longer the issue it once was' message can trigger many to get tested. Obviously, I had no illusions as to the existence of a 'cure' though...
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Offline Jim Allen

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Re: Newly Diagnosed (video series)
« Reply #23 on: February 19, 2017, 06:40:32 am »
Yeah so what you told me mirrors what I see.

(forgive) your personal experience is exactly what I see in people of a slightly more mature age group. Thinking and/or wanting to believe nasty stuff will be tested as routine when its not, and believing doctors would mention it when they don't... Now don't get me wrong I also blame the way we communicate this in healthcare settings when taking blood, using terms as "all clear" or "nothing wrong" and not setting correct expectations what the tests do test for, not to mention GP's not pushing people to test.

Its the younger age groups however that I see are more of risk of falling into the "cure" trap in terms of testing. To them it incorrectly means no concerns as if they ever do get it than its curable with a pill treat it and done, so no need to worry about testing if your not sick. Its modern media fault as well, daft headlines and it all compound the issues.. So you can imagine the shock on them when i tell young people firstly no it s not curable, its not tested for unless you spesificly test and oh yeah it killed over a million people last year.

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« Last Edit: February 19, 2017, 06:54:57 am by JimDublin »
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Offline awakening

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Re: Newly Diagnosed (video series)
« Reply #24 on: February 19, 2017, 07:31:21 pm »
Jennifer's new website has a private section (need to contact her to join) which is a support group for HIV+ women and might be of interest to some of the forum members.

https://www.jennifervaughan.org/
~~~~
[month/date/year]
3/1/16: Tested neg (Oral swab)
6/17/16: Diagnosed poz (finger prick), confirmed w/Multispot assay
6/17/16: VL 22,900, CD4 - 524 cells/uL (30%)
7/2/16: Started Triumeq (DTG+ABC+3TC)
8/1/16: VL 30
10/4/16: VL <20, CD4 - 630 (31%)
1/4/17: VL 90
2/7/17: Undetected
4/17/17: Undetected, CD4 - 695 (33%)
7/20/17: VL 75
8/21/17: VL <20
11/27/17: VL<20
3/26/18: VL<20, CD4 - 701 (36%)
5/14/18: Switch to Juluca (DTG+RPV)
6/11/18: VL<20
7/25/18: Undetected, CD4 - 632 (38%)
1/22/19: VL<20

Offline CaveyUK

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Re: Newly Diagnosed (video series)
« Reply #25 on: February 27, 2017, 03:59:23 pm »
I did say I emailed Jennifer, and I meant to post that she replied. The pertinent extracts relating to the 'cure' thing are below. I don't think there is any reason not to share this to be honest and I think it's only fair given the prior discussion... oh, and kudos to her for taking the time to reply...hope she joins up here

Quote
As far as a cure, I really haven't talked about it much at all, other than mentioning in my first video that my doctor said there should be a cure within the next 5 years (keep in mind when I did that video, I had no idea that speaking about HIV would become my new course in life). 

I have several HIV+ contacts who send me the most recent scientific articles on the topic of cures and studies that have been done. It's definitely not my platform, I'm focusing more on stigma and anxiety related to testing, as well as, encouraging testing itself. 

I myself have also mentioned that I'm not waiting for a cure because I feel that treatment is manageable.   
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