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Author Topic: Has HIV affected your loved ones psychologically more than you?  (Read 3421 times)

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Offline Ihavehope

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  • Posts: 1,366
  • Yes, I'm a cry baby, AND WHAT?
I am wondering about disclosing to certain close people in my life very very soon. I am aware that this is a serious disease and I can die from it. etc. etc. What I am afraid of is that the one's closest to me such as mother and father, sibling will react in a manner where they will sink into a deep depression and live the rest of their days fearing for my life. I talked to two specialist and one told me to wait until I am ready and I don't necessarily have to disclose to everyone and the second therapist told me it is going to come up sooner or later. In my heart, I know the best thing for myself is to reveal this secret but I really think my parents and siblings will over-react to the point that they will do something drastic (kick me out of the house, cry day and night and keep their distance from me). Has anyone dealt with realtives and loved one's who took it far worse than you expected.
Infected: April 2005
12/6/06 - Diagnosed HIV positive
12/19/06 - CD4 = 240  22% VL = 26,300
1/4/07 - CD4 = 200 16% VL = ?
2/9/07 = Started Kaletra/Truvada
3/13/07 = CD4 = 386 22% VL ?

Offline ScooterTrash

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Re: Has HIV affected your loved ones psychologically more than you?
« Reply #1 on: March 05, 2007, 01:44:10 PM »
I'm going to try to be very careful about how I reply to this because I cannot possibly know how your loved-ones will react to and cope with the news.
IMHO, both of the specialists are right; It is going to come up sooner or later, and you don't have to tell them until you are ready.
My Dad is, and always has been my hero. Sitting down with him and telling him that I was sick was one of the most difficult things I have ever had to do. Because I had the same concerns as you. I had only kept my secret for a few months. But it was weighing heavily on me. I felt alone, and really had no one who I could talk to about my fears. When I told him, he was hurt.. Of course he was. He loves me. And I can tell that althogh he trys to hide it, it has saddened him. But this is life... life is not always perfect. We learn to cope. We learn to adapt. At first, my Dad was the only one who knew. That was 13 years ago. I put off telling the rest of my friends for another year. I didn't want to be treated differently. And I didn't want people to worry. But my personal experience was that when I did disclose my poz status to my friends and family, I was accepted and loved. And although my friends and family are concerned, they haven't treated me much differently. And they don't seem to have suffered any significant depression. They are just more loving - and for me, not having to carry the weight of my "secret" was a huge relief.
I hope that when you are ready, you will have the same fortune.

Offline Ihavehope

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  • Posts: 1,366
  • Yes, I'm a cry baby, AND WHAT?
Re: Has HIV affected your loved ones psychologically more than you?
« Reply #2 on: March 05, 2007, 01:46:23 PM »
thank you scootertrash.

Your words have helped me more than you can imagine.
Infected: April 2005
12/6/06 - Diagnosed HIV positive
12/19/06 - CD4 = 240  22% VL = 26,300
1/4/07 - CD4 = 200 16% VL = ?
2/9/07 = Started Kaletra/Truvada
3/13/07 = CD4 = 386 22% VL ?

Offline Zanarkand

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Re: Has HIV affected your loved ones psychologically more than you?
« Reply #3 on: March 05, 2007, 01:51:23 PM »
Today I told my Mom, Mom in Law, Granma In Law, 2nd Best Friend...
Hospitals tend to force things out of the dark.
They really need Dimming lights, damn!!
 :)
All Your Base Are Belong To Us

Offline zeb

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  • Posts: 172
Re: Has HIV affected your loved ones psychologically more than you?
« Reply #4 on: March 05, 2007, 01:55:47 PM »
well,

I haven't disclosed. Why? I hope and expect to outlive my parents. And I can't stand the thought to hurt them. they both are 70 now and my mother has a heart disease. If i'd disclose she'd probably collapse.

Zeb

Offline Peter6836

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  • Me and my Granddaughter Noa
Re: Has HIV affected your loved ones psychologically more than you?
« Reply #5 on: March 05, 2007, 02:09:24 PM »
I told my parents right away, albeit for selfish reasons I needed the support. Although they never wanted to talk about me being gay, they have been a wonderful support to me. My father even told me last night that he was proud of me and the manner in which I am dealing with this disease.

 I have four adult children ages 27,26,24,24. They all reacted differently, I became ill right away and was diagnosed with aids so it was difficult for me to not telll them. I wanted to wait until I recovered from my OI before I spoke to them. That wasnt the case and as is with many things I was forced to discuss it with them. (my daughter opened an envelope containing my doctors refferal with my diagnosis on it). My oldest continued to tell me that I was taking things too lightly and not facing the reality of my mortality. My middle son does not want to talk about it. My youngest son was angry and accused me of being infected on purpose. My daughter was wonderful. I have been on Atripla since before Christmas. My health got worse before it got better. But everyone was supportive and I felt good about not having to hide anything. (too much stress with secrets)

 Now I am feeling much better my children are dealing with things in a much better way, and I know that they will be there for me if I get sick again. I know it is a risk to disclose. But I have found that my relationships have improved with my discloser and honesty. It helps that I have a good attitude and that I continue to keep a good attitude. I think in the long run the psychological impact of being honest with everyone will benefit them as well as me.

Peter

Offline Life

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  • Member 2005
Re: Has HIV affected your loved ones psychologically more than you?
« Reply #6 on: March 05, 2007, 02:32:33 PM »
Once its out there, its out there and never coming back... Be careful in the why's that you do a thing...   I broke the news to my family in the second week after diagnosis.   Was it a bad thing??  Don't know yet..  Have I noticed changes in how my Parents and my brothers and sisters react??  Not really, not yet...   I to probably did this out of selfish reasons or for the matter that I was scared shittless for my life??  I don't think that is wrong at all...  For one, my Dads a Doc and my brother is a pharmacist.  I got the love care and support that I needed then.   Now I do not need it so much....  The first thing out of my Dad's mouth was - "I thought so and you know Eric,  I use to watch entire wards clear out from death every 3 to 4 months and be replaced by the next patients.   I do not see that anymore Eric and I have faith in your ID Doc son... bla bla bla..  That meant alot to me...

My husband has not told his Mom and Dad now in their 80's.   "As of now its a non-issue and I am not sick and I am not going to die" - Quoteth my husband.  Why bother them with something like this??  Support??  Well William gets his support elsewhere, either from me, Dr. Ben or his closeest friends who do know.

I have always told myself that I will be open to my parents and my brothers and sisters.   I think I am the only one who tells it ALL how it is..   At least I do not have this "secret" and I really do not think of this as a that, but as a disease that I chose to be candid with.   If I am in denial (and I hate that word to) how can I be honest with myself let alone my family?

I don't like secrets in my life...

 

Offline BKNYLivin

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Re: Has HIV affected your loved ones psychologically more than you?
« Reply #7 on: March 05, 2007, 05:07:43 PM »
Sometimes we underestimate our families and close friends. I was very scared/worried about telling my parents, but deep down I knew I had to sooner or later - we are not big on secrets in my family. They have been GREAT and a source of strength and support. Like many, I was concerned about starting HAART - they have been there for me all the way.
I have only told a few really close friends and that's enough for me - some people don't need to know. I think it's important to follow your instincts and you'll know when the time is right - personally, I'm glad the burden has been lifted and I have family and friends I can discuss things with.
I intend to start dating again at some point in the future(when I'm ready) and I don't think it's fair to expect one's lover/partner to be the only source of support. In my opinion, that's what family, friends and therapists are for.
Good Luck, I'm sure it will all work out and those who truly love you will be by your side.
Diagnosed 9/18/06
10/13/06 - CD4:449, 33%,  VL:>500,000
11/20/06 - CD4: 392  VL:425,000
02/08/07 - CD4: 361, 16.9% VL:133,000
02/13/07 - Started HAART: Atripla
03/08/07 - CD4:401, 23.8% VL:643
06/05/07 - CD4:614, 33.6% VL:225
09/14/07 - CD4:612, 37%  VL: <50
12/14/07 - CD4:582, 38.5% VL:<50
4/11/08 - CD4: 658, VL: <50
3/5/09 - CD4: 847, 49% VL: <50
7/29/09 - CD4: 965, 50.1% VL: <50
12/28/09 - CD4: 925, 49.2% vl <50
9/16/10 - CD4: 1011 vl: <50

Offline Jeffreyj

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Re: Has HIV affected your loved ones psychologically more than you?
« Reply #8 on: March 06, 2007, 02:37:52 AM »
I find it kind of sad that you refer to your having HIV "A SECRET". After all, it is your reality. The sooner you make your secret  your reality, the better off you will be. But to make this happen, you have to give up that Secret. Sounds crazy, but we have all had to deal with HIV as a secret at one point.
I kept it "A Secret" for 15 years, not telling a soul. My wife and I decided it would be easier this way. Of course things were much different in 1984 then now. We just had our reasons (fear of losing our jobs, insurance...etc). the bottom line is everyone has their own situation to deal with, and one must do what's best for ones self. I highly recommend to think this out very carefully. Like Eric said, once it's out, there is no taking it back. This is a big deal. And you would be best served to treat it as such. My wife and I made a plan, and stuck to it. It was only upon her death that I told my family. I wanted to tell them years earlier, but my wife and I decided to lay low. And it worked really well for us. We made it work, and work it surely did. We loved each day, and every minute in every day. This formula made our marriage the best 15 year marriage on Earth, I like to believe. And I have HIV to thank for that. HIV actually brought us closer together: It forced us to focus on loving each other and being so very grateful for every day we had together.
HIV has made me a very blessed man, having had a great, loving 15 year marriage. And I would never change a thing, even if I could.

When Kandi, my wife, passed away in 1999, it was then I decided to disclose to my family. I lived in California at the time. I thought it would be best if I told them all in person. This is something I wanted to do, a phone call just didn't feel right. I knew they would have allot of questions. And I wanted to be there in person to deal with it.
I have 3 older brothers. The oldest, Pete, I was closest to. And sadly, Pete has never called me once since I told him. I always call him. We used to talk about all sports at least once a month. No more. The phone has gone silent. No birthday cards anymore. No calls, no nothing. The other two took it very well, as did both my parents. One out of five not bad, but not what I had hoped for.

I felt in my heart that that was the right time to tell my family. I would urge you to search your soul, and in the end, follow your deepest gut feeling, and go with it. Take your time.
As I soon found out, I had no control over my families feelings. I could not be responsible for their feelings. I told them because I felt it was time. Yes, I'm sad that I lost my older brother in a sense, but I simply could not hold it in any longer. You can control when to tell them. When you do, you can't control, or be responsible for their feelings and reaction. That is on them. They will have to account for themselves...NOT YOU.
I can tell you this: After I told everyone, I felt an enormous amount of pressure lifted off my shoulders. I mean I really did feel like a new person. It was the hardest thing I ever had to do. But man, the relief was a huge payoff. I knew after it was all over, that I did the right thing for myself.
My oldest brother Pete feels has the right to feel whatever he wants. I have to respect that. I fully understand that he has no fucking idea what it is like to live with HIV/AIDS. How could he? I think this is an important thing to keep in your mind as you tell your family. Don't be mad at them for not "getting" it or understanding what it like to have HIV...How could they possible get it. ...Hell, I have lived with it for 23 years now, and some days I don't get it. It's a fucking complicated deal.
Gawd this is getting way long. Sorry about the length, but I hope I could shed a little light on a difficult subject.
You will be fine. After all you have AIDSMED. And most of us "get it" and you can lean on us to help you through.
In Love and Support,
Jeff
Positive since 1985

Offline koi1

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  • Posts: 713
Re: Has HIV affected your loved ones psychologically more than you?
« Reply #9 on: March 06, 2007, 08:59:41 AM »
I wouls look at the health of your parents. That is the main reason I did not tell mey mom. She is in her seventies, so why add another burden on top of her already substantial problems.

My ex disclosed to some of my family, and though I was really pissed at him for that, it was a blessing.  They care and love me and now I don't feel so alone. I visit one of my sisters every morning. We have coffee and chat about life in general and sometimes HIV. I even tol them that they should tell their children and talk openly about HIV and other STDS. My 18 year old niece now knows and has become more aware, and even decided to go get the HPV and the hepatitis vaccine. So I guess some good can come out of my condiition.

You definitlely need another person in your family for support. I don't know about telling your parents if they have health problems. That would worry me.
Remember that sadness and stress brings on other health problems. So it might not be the thing to do just yet. I hope you are able to tell someone else and get the support you need. I feel for you.

rob
diagnosed on 11/20/06 viral load 23,000  cd4 97    8%
01/04/07 six weeks after diagnosis vl 53,000 cd4 cd4 70    6%
Began sustiva truvada 01/04/07
newest labs  drawn on 01/15/07  vl 1,100    cd4 119    7%
Drawn 02/10/07
cd4=160 viral load= 131 percentage= 8%
New labs 3/10/07 (two months on sustiva truvada
cd4 count 292  percentage 14 viral load undetectable

Offline DanielMark

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Re: Has HIV affected your loved ones psychologically more than you?
« Reply #10 on: March 06, 2007, 03:46:50 PM »
Disclosure with discretion is something to consider. I have disclosed my health status to everyone who matters to me. Not to do so would seem to be taking away their choice to be involved when I might need their support. In my mind thereís no right or wrong or cookie cutter solution to the problem of disclosure. Everybody's different.

Daniel
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline mjmel

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Re: Has HIV affected your loved ones psychologically more than you?
« Reply #11 on: March 06, 2007, 04:06:27 PM »
jeffreyj:
thanks for the sharing. that is an exceptional post.
xxx,
Mike

Offline med forum

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  • Posts: 76
Re: Has HIV affected your loved ones psychologically more than you?
« Reply #12 on: March 07, 2007, 07:13:59 AM »
I think Daniel made a good point by stating Disclosure with discretion....take your time....only you will know when it is a good time to tell those you love and/or those around you. I feel that you are coming closer to sharing with your family and friends when you are asking the question of "When is a good time to sit down and talk with them" as opposed to asking the question "Should I tell them?"

Peace & health

Offline dtwpuck

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  • дано мне тело, что мне делать с ним?
Re: Has HIV affected your loved ones psychologically more than you?
« Reply #13 on: March 07, 2007, 07:36:03 AM »
Has anyone dealt with realtives and loved one's who took it far worse than you expected.

I chose not to disclose to my mother for quite a while.  This was hard for me because I am naturally open.  But I knew she would take it very very hard.  What I had to do was really take a hard look at

1.  Why I was going to tell her   and
2.  What would be the easiest way, given her personality, to inform her.

As for Why...  it would be ultimately because I could no longer go it alone.  I was ready.
As for two... well, I brought my sister in to help us tell her together.  She fell apart, but I came armed with tons and tons of literature (which helps in my mother's case), and made sure her best friend and sister were going to be available for support.  She DID overreact.  Aside from the incessant sobbing, she decided she had to come over every other day and disinfect my apartment.  I felt this to be a slight invasion, but decided not to fight it because it helped her feel like she was doing something.  She still tries to tell me how to talk to doctors and goes on the mad mom rampage should I experience any kind of side effect from the meds.  I'm glad I don't let her talk to my doctors.

This is just my experience.  Your family is different.  But before you tell them, should you decide to tell them, I would sit down and figure out the most compassionate and kind way to let them know.  And, please, only do it when you are ready and able to handle their emotional reactions.  It's very tough to be stuggling yourself and have to provide support to unhappy relatives. 
Floating through the void in the caress of two giant pink lobsters named Esmerelda and Keith.

Offline bear60

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Re: Has HIV affected your loved ones psychologically more than you?
« Reply #14 on: March 07, 2007, 09:44:48 AM »
I have been going back and forth about  a reply here.  I write it erase it....write it then erase it. What I want to say is this:  just because a parent is over seventy does not necessarily mean they cant take the news of a son or daughter being HIV positive.   Then I erase it....because I know that each of us has a different family situation and the health of our parents varies greatly. And the mental, emotional, distress varies depending on religion, and other factors. Ok, so no two families are the same.
But I still  need to say:    I think you are under- rating the love, compassion and strength that parents show to their children and this does not stop at 60 or 70 or 80 years of age. My parents were over 80 when I told them that I was HIV positive.  Frankly, because this was in the 1980's I was afraid that I would develop an Opportunistic Infection and they would have to find out I was HIV positive when they came to visit me in the hospital.  I did't want that to happen. So, I told them I was positive in order to have time to spend with them as a healthy person. There were some tears but basically they accepted that I needed their support and they gave it to me. My mother is now 96 and she has developed senile dementia. I am so glad that I have had this time with her before she became ill. I know she would have felt the same way about me.  Telling her that I was HIV positive brought us closer together.
Now, as experience with HIV has changed the expectations surrounding the "disease", why are people still afraid to tell their families? Is the stigma so great that HIV continues to be...not a medical condition.... but rather something SHAMEFUL?

Poz Bear Type in Philadelphia

Offline Ihavehope

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  • Yes, I'm a cry baby, AND WHAT?
Re: Has HIV affected your loved ones psychologically more than you?
« Reply #15 on: March 07, 2007, 09:56:39 AM »
thank you bear. You are certainly a  !

My mommy is in her mid 50's and my daddy is in his late 50's. My mother has diabetes and my father is healthy as of now. I think it is best to tell them now than 10 or 20 years from now (hoping I am alive, crossing my fingers and hoping they are alive too). I do not want to wait to tell them in my death bed or in the hospital getting treated. I guess I am a bit traumatized because my grandmom was also diabetic and suffered a stroke when one her son's gave her some bad news and 2 days later my grandmother was in the hospital in coma and died a few weeks later. Till this day my uncle lives with that remorse in his head and none of his siblings talk to him, especially my mother. Your advice has helped me ALOT.. thank you sexy bear.
Infected: April 2005
12/6/06 - Diagnosed HIV positive
12/19/06 - CD4 = 240  22% VL = 26,300
1/4/07 - CD4 = 200 16% VL = ?
2/9/07 = Started Kaletra/Truvada
3/13/07 = CD4 = 386 22% VL ?

Offline Zanarkand

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Re: Has HIV affected your loved ones psychologically more than you?
« Reply #16 on: March 07, 2007, 10:39:23 AM »
When people understand the issue at hand,
They can support you,
Be with you.

If you hide things from them
It can be more painful than the virus itself.
All Your Base Are Belong To Us

Offline DanielMark

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Re: Has HIV affected your loved ones psychologically more than you?
« Reply #17 on: March 08, 2007, 06:22:31 AM »
But I still  need to say:    I think you are under- rating the love, compassion and strength that parents show to their children and this does not stop at 60 or 70 or 80 years of age.

Indeed, to underestimate the strengths and intelligence of our parents or elders or anyone for that matter is rather disrespectful. With age comes wisdom (hopefully), and coping with bad news will be nothing new to them by their later years.

I couldnít function fully if I carried HIV as some kind of secret. Thatís a lot of work, and in the end would likely do more harm than disclosure ever could. However, disclosure remains a personal decision. I can respect that. Everybodyís different.

Daniel
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline koi1

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Re: Has HIV affected your loved ones psychologically more than you?
« Reply #18 on: March 08, 2007, 07:56:00 AM »
I understand the point about parents being loving by nature. I do believe my mother loves me a lot. And she has been through tons of heartbreak in her life and has come out on top. She has shown 100 times more courage than I ever have, but I can't forget the fact that she has:

Emphysema, from working in restaurant kitchens,

Arthritis, from working in fields,

High blood pressure from life,

diabetes, because her Latin Roots predispose her,

glaucoma from complications of diabetes,

She is on heart medication, and she has suffered 3 strokes.

She knows how this disease took a very dear friend of and relative,

I am doing fine and expect to do even better. I need her there as my mom

as she always has been.  It would be selfish for me to tell her that her youngest child has AIDS. It just does not make any sense to me. I love her enought to want the rest of her years to be as happy as they can be. I have enought support from my sisters, a friend, and an ex, and my aidsmeds folks. Perhaps this explains better why I won't tell my mother.

rob

diagnosed on 11/20/06 viral load 23,000  cd4 97    8%
01/04/07 six weeks after diagnosis vl 53,000 cd4 cd4 70    6%
Began sustiva truvada 01/04/07
newest labs  drawn on 01/15/07  vl 1,100    cd4 119    7%
Drawn 02/10/07
cd4=160 viral load= 131 percentage= 8%
New labs 3/10/07 (two months on sustiva truvada
cd4 count 292  percentage 14 viral load undetectable

Offline bear60

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Re: Has HIV affected your loved ones psychologically more than you?
« Reply #19 on: March 08, 2007, 11:06:16 AM »
rob
I know its difficult.  Of course its your decision.  Noone can make you tell your Mom ....nor should they.
We are with you whatever decision you make.  I think people hold back information from loved ones all the time. It often makes life easier for the family.
But, in many situations, its important that full disclosure be made.  Important because the family is going to need to make decisions  about medical treatment, about life ending situations, and eventually ...... final arrangements.
I am glad that my mother did not have to bury her son, but all of my friends who have died from complications due to HIV/AIDS..... had mothers. I have held their hands, hugged them at the gravesite and consoled them. These mothers were all 60....70 or more. They all had their own medical problems sometimes making it difficult for them to fly here  in an emergency.  But they were unavoidably and ultimately one of the persons who had to BE THERE when their son died. 
Now, Rob,  if you are healthy and going about your life as normal, then why tell your MOm. I agree. No need. But I have to ask.....if your sisters know about your HIV diagnosis, aren't you concerned that they will let it slip to your Mom?

Poz Bear Type in Philadelphia

Offline catwoman

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Re: Has HIV affected your loved ones psychologically more than you?
« Reply #20 on: March 08, 2007, 02:25:25 PM »
I have only disclosed to my parents, my 2 brothers, and my husband.  That's it and that will be it.  My parents naturally worry more than I do.  As time passes and they see that I'm doing fine and living my life well, they are worrying less.  I haven't disclosed to anyone else because of the exact reason you speak of.  My friends and in laws and aunts and uncles would worry incessantly.  It would become a running theme and then life would not be enjoyed because everyone would be worrying about foolishness.  I battled, when I first found out (Dec. 2005), about disclosure too, but the 5 people who know are the 1st people I ever thought of disclosing to and that's it.  Sometimes, you have to pick your battles.  I'm now glad I haven't disclosed to anyone else because I feel great.  There is no one showering me with negative worry energy.

 


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