I don't know what the best response is. I will tell you that a common experience I would have is people wouldn't mention it again.
They wouldn't freak out or run away or anything, or say anything really hard for me or inappropriate or offensive. They just would never bring it up again - like I had never said it.
I would even sometimes come back and say, "I'm sorry if I overwhelmed you. I know it can be a lot. It's a scary thing and I'm really sorry if it was too much."
"No, no, no, I'm very glad you told me."
That was often the reaction and then it would never come up again. It's just kind of a weird feeling. It didn't feel authentically like there's so much exposure to HIV that you realize, "Yeah, I'll add you to the list." It wasn't that, it was just more, "I don't know what to say. I can't approach this."
My husband -- the man who eventually became my husband -- he stood out to me because he started asking me all these thoughtful questions: "How much of your life do you think is HIV? If you were to make a pie chart of your life, how much is HIV? Do you think that it prevents you from trusting people? Do you think it affects your desire to be in a relationship?" Things like this, and I remembered thinking, "Who is this person?"
What was the worst reaction you got when you were disclosing?
I haven't had any terrible reactions. I was talking to a person recently who's a correctional officer. He was guarding a patient we had in the hospital. He and I were talking, and he started to say something that made my guard go up about, "Oh God, what's he going to say next about people with HIV?" I blurted out, which is not characteristic for me, "I have HIV, just so you know."
It was really my way of saying, "Before you say the next thing you're going to say, I want you to at least know that you're talking to someone who has this." I think there have been a few times like that, where I've end-run a potentially bad situation. I haven't had terrible situations.
For me this feels bad: I'm not saying it's terrible, but it doesn't feel good for me personally when I will tell someone -- which is, by the way, a very personal and difficult thing to say no matter how used to it you are in terms of saying it -- and that person will then very quickly say, "Oh, how'd you get it?"
Wow, that's their first question? Not "How are you?" or "How's your health?" or "How are you doing with it?" or "How long has it been?" but "How'd you get it?"
Very quickly you go from being this person who's just sharing. You've chosen this person to tell this to and what comes back to you is, "You're an object. I get to start finding out all these pieces of you."
Asking somebody, "How'd you get it?" -- especially in a casual way -- to me is hard, because no matter what the answer is, it's personal. Breast milk is personal. Needles are personal. Sex is personal. It's no small thing to tell someone how you got HIV.
It was hard for me for a long time to not assume I was being judged. Oh, you want to know if I do something you don't do. You want to make sure I'm doing something that you don't do. You want to put me in a box. You want to say, "Oh, she's promiscuous. She was a drug addict. I see, OK."
It took me a while to understand and it was actually only through the help of loving friends who would listen to me very patiently who would say to me, "You know, that's not always true. People don't always know anybody with HIV. For them, they're shocked. They're sad. In that moment, they may not be doing their best. All they can think of is, 'How did this happen to you, this person I know and like?' You have to give them some room there to have their reaction."
That was a good lesson for me, that I can't presume what's in people's hearts based on one question. All I do know is that it doesn't feel that great to me. My deal is, when someone asks me, "How'd you get it?" I say, "Why do you want to know?" I want them to claim it. Sometimes, people will say, "I'm just curious." Wow, OK, you're just curious. My answer is really, really intimate. For me, it's this intimate part of my life that wasn't without pain and difficulty.
That was a bit of an imbalance for me. I think it's incredibly important to share these things, because it helps us understand where risk is, and that it's often in places we don't expect it. Many of our stories are exactly that. I also think there is a necessity for a great deal of respect around the issue.
Comment by: GANESH GURUNG
Mon., Jul. 7, 2014 at 3:18 am EDT
HIV/AIDS is not curable but we are manage theme so
please don't be offered am also positive 12 year to ago it is globally cause / issue so don't be nerves. thanks.
Comment by: Robert M
Wed., Aug. 28, 2013 at 6:44 pm EDT
I became infected in1995 so it was a different time'however I became very sick and obviously something was wrong so it come down to which I would rather die with knowing that I had not been honest with my family or hurting them now and being at peace with that I had been totally candid with them.I chose to disclose with much anxiety,but made the right decision. They have told me many times that it would have been harder on them if I hadn't told.In the process have found more support through them .
Comment by: Chris Aitchison
Wed., Aug. 28, 2013 at 12:55 pm EDT
A psychologist responded to me when I was concerned about disclosure on a personal level. "Reverse it, when would you like to be told" I'd replied upfront if things were headed in a direction where hiv would become a potential issue.
"Then that is when it is right for you to disclose" was his response. I won't pretend it has always been easy but I'm being true to me and the majority of people respect my honesty.
Comment by: Frank
Wed., Jul. 11, 2012 at 8:32 am EDT
I was diagnosed HIV positive two weeks ago. I had a sense that the diagnosis was coming for a couple of months so I mentally prepared for it (hope for the best, plan for the worst sort of thing). I believe I am handling the news well and have just started the treatments with my doctor, who I like very much.
What I don't know how to handle is how to tell my partner of 10 years. He lives in Texas, I am in DC. He is a great guy and I think he will take it well, although not initially. Does anyone have some advice on how to tell your life partner about your status? Stories to share?
Thank you all.
Comment by: Anne P.
(Kampala - Uganda)
Thu., Apr. 12, 2012 at 9:02 am EDT
I was diagnosed HIV+ve in Feb 1991 while in high school.
It was hard time those years but iam now happy I have got children all born in this error but they are HIV -ve so I would continue to give the newly diagnosed hope and encouragement to live to the next genration.
Comment by: Tony L.
Fri., Apr. 6, 2012 at 11:28 am EDT
Every Year Big Pharma are developing better and more effective HIV drugs, it is no longer a death sentence,God bless you all, Ye are very brave, Tony.
Comment by: M. Martino
Tue., Jul. 5, 2011 at 3:48 am EDT
I was diagnosed to have HIV last year June 2010. My partner died of AIDS September 2010, days after his 31st birthday and days before our first anniversary. Being a new possy is tough but reading testimonies here gives me more courage to live longer and of value.
I won't ever tell my parents about my case as I don't want them to worry too much about me. I just told my brothers and they accepted me. I was so happy reading a text message from my brother that he loves me. I never thought I'd receive it from him.
HIV is a blessing for me as I learned to see beauty in all angles. Though living with it is tough, lonely and sometimes discouraging, I always remind myself of what my brother told me, "Being a possy is just a small fraction of who we are." We can still live a normal life.
With all gratefulness to people who are advocates of HIV/AIDS and who sponsor medications for those who need it, I promise to save lives by educating the youngsters. You guys are angels.
My life has more meaning being positive and I won't waste it.
Comment by: jennifer G
Thu., Mar. 10, 2011 at 3:16 am EST
i found out on monday the 7th of march 2011 i am completely devastated i feel all alone i am scarred what do i do now what do i do when people treat me like the plague i totally believe in god but i have so many questions in my mind
Comment by: Daniel
Sat., Jan. 2, 2010 at 4:47 pm EST
I was diagnosed last year and had to go on to medication straight away...I get so paranoid when I go outside I feel that everyone knows and im scared whether I should tell future partners or not...Im undetectable but it must scare people to share what this all means...my God will I ever find someone who will love me with this thing
Comment by: SISCO2010
Sun., Dec. 20, 2009 at 12:30 pm EST
I HAVE BEEN IN THE HEALTH CARE FOR MORE THEN 14YEARS AND YES I HAVE SEEN ALOT OF SICK PEOPLE
I JUST WANT TO SAY TO ALL OF YOU KEEP ON THE
GOOD WORK AND BE STRONG....
Comment by: InNeedofPrayer
Tue., Dec. 8, 2009 at 1:33 am EST
I was recently diagnosed with HIV about two weeks ago. Actually two days after my 27th birthday. I told two of my sisters that day and my mom the next day. They have been very supportive thus far and I don't really expect that to change. As for myself, I'm not scared of the thought of death or anything. However I fear growing old alone and having to tell more people and they in turn walking out of my life. I wish I had someone here to talk to that's been through this. Im glad I found this website though.
Comment by: elvia
Sun., Nov. 29, 2009 at 6:27 pm EST
hello I wasn't dx'd my brother was(+hiv). he found out two weeks ago and decided to tell me on thanksgiving. I'm waiting for monday to call my doc to get meds for my self to be able to relax. I just cant stop thinking about the whole situation. I keep crying and different thoughts come in to my mind. my husband keeps telling me he will be alright because the advancements of medicines now and what we know about the disease. No one knows about him but my aunt, me and my husband. He hasn't had the courage to tell my parents so i'm trying to give him my courage ;) what can I do. well on thursday we will be going to the dr with him so we are going to have a lot of questions. I think what hurts me the most is that he does not have a ptr for support cause i know there is only so much i can do for support. He says sis that hurts me a lot im 25 and have no one now it's gona even tougher to find a ptr but i told him that's not true. so i got online to get info this is all new to me i'm lost so i'm looking for information on how to go about all of this. thanks for any suggestions.....
Comment by: blue
Sat., Nov. 21, 2009 at 4:39 am EST
Im 30 now just diagnosed last may 2009. So scared since i have my best wc has the same illness (hiv) that in the hospital right now. He is in coma stage. I decided to quit job and live in the province together with my family. My family just arrived and monday will be the day that they will know what will be my illness. Too hard to give your career and life in the city but i guess god has a lot offer. Wish me luck.
Comment by: sazila
Fri., Nov. 20, 2009 at 7:04 am EST
l was diagnosed of hiv in 2006, cd level 139, viral load 33000 refused medication. living positive no sickness. only god keeps doctor said you are 1 in 1mil to be lucky with no infection not true god can keep you well only believe.
Comment by: julio
Sun., Nov. 8, 2009 at 8:08 am EST
I have just tested and the first person i have told about the results is my big sister but i do not know how she is going to react.
I even fear to show the external symptoms. what cream should i apply to keep my body fresh? please help me.
Comment by: Abie
(New York, NY)
Fri., Oct. 16, 2009 at 8:35 am EDT
Faith: You need to get support and learn more about HIV. You cannot infect your patients because you are not exposing them to your blood or vaginal fluids! So there is NO need to tell your job, unless you're legally required to do so. You do not put your patients at risk. There is so much discrimination and stigma everywhere when it comes to HIV that there is no need to tell your job. And as for family and friends, you need to get strong first to deal with their emotions. I don't know where you are in Texas, but there are lots of aids organizations
http://www.thebody.com/index/hotlines/other.html#Texas If you want to talk to another woman with HIV, Call Women Alive:
1-800-554-4876 mon-fri 11-5 (calif time) Remember you can make your life less scary, but you have to get some courage and take some important first steps. Read the stories here to get some energy!
Good luck! Abie
Comment by: Faith
Thu., Oct. 15, 2009 at 1:33 pm EDT
I found out i was positive and still haven't told my family. And the one person that i did know passed away. I'm afraid. Can someone help me on how to tell my family and my job. I draw blood for a living and am afraid I may infect one of my patients.
Comment by: Abie
(New york, ny)
Mon., Oct. 12, 2009 at 2:03 pm EDT
Easy E: there are lots of places to get help in south africa. Stay away from people selling herbs. There have been no herbs that have helped people with HIV. you need to see someone who is expert in HIV...call this hotline
The National AIDS Helpline (0800-012-322) it provides a confidential, anonymous 24-hour toll-free telephone counselling, information and referral service
Comment by: Easy E
Wed., Oct. 7, 2009 at 8:02 am EDT
I found out I'm HIV+ in August 09 and it's been a hard life since then. Are there any HIV groups in South Africa around JHB I can join? Anyone please help...Again anyone who knows when the cure for this will be found? I have read about HERBS etc helping anyone who knows exacly what i can buy? Please help, I'm confused now!
Comment by: Sara
Wed., Sep. 23, 2009 at 2:45 pm EDT
Hi I've never thought I would come across such an intersting and open site. I'm very greatful to find this. Although my story could be a movie script but it is true. Just before 9/11 happened I was the most happy go person. Although all of you might have a hard time to understand what I'm writing about but you all know someone or been affected by this vicious virus, Well someone close to my heart was diagnosed with HIV and did not even know it. I got the Information and was broken to pieces by it, my happyness was gone instantly. Now almost nine years later I'm still grieving about it and gave myself a scare mostly. surprisingly is this person I love and care so much about it is living well and got married had a beautiful child, So nowadays I sit and think maybe the test was done wrong or what is this, I am very honored to have this person in my life and no matter what I will always be there in good and bad. What I want to ask everyone here is
1 Has anyone been in this kinda position?
2 How did you cope with it?
Please let me know
Proud all you out there
Just think when you you are alone, someone that loves and cares about you is always there
Comment by: Michelle
Mon., Sep. 14, 2009 at 12:37 pm EDT
Hi all i'm not Hiv+ but i just love this site and hearing all these stories about how brave you all are after being diagnosed. All these stories also makes me aware about having protected sex. And no matter how bad it may seem just hold on because it will get better. God loves us all and he will not forsake you.
Comment by: V M A
Sat., Aug. 22, 2009 at 4:56 pm EDT
I JUST FOUND OUT MY BROTHER HAS HIV FOR THE LAST 2 YEARS. HE TOLD THE FAMILY IT WAS SOMETHING ELSE. I LIVE 4 HOURS AWAY. I JUST WANT TO HUG HIM!
Comment by: Shadow
Sun., Aug. 9, 2009 at 9:44 pm EDT
I was diagnosed in 2003, as a heterosexual man living without the love and intimacy of a woman is a living hell. There is a void in my life that only being with a woman can fill. I don't how to live a normal life and be lonely. How do you take that chance to tell a woman your interested in that your HIV positive?
Comment by: john
Wed., Aug. 5, 2009 at 6:56 pm EDT
To Matt and Pete in uk!,
Matt, well done for realising that this just does n`t happen to `others`!! (like i stupidly thought) A few seconds of unprotected sex and is enough .. unfortunately!! Take care of yourself!!
Pete, I so know where you`re coming from when you say that you felt you`re by yourself dealing with this awful situation!! I`m in France .. jus across the `channel` or `la manche` as the frogs call it!!
There`s so many of in this situation, sites like this are great support,
Comment by: Matt
Fri., Jul. 31, 2009 at 1:38 pm EDT
Hello everyone, just thought I would say to anyone scared of getting a test to do it. Although as a gay man I have gone to my local GUM clinic for about 7 years for check ups, I always put off the HIV test as I was scared of getting a Poz result. I have taken a few stupid risks in the past with one or two guys where I had unprotected sex. After meeting a great HIV poz guy a few months ago, I realised getting tested isn't that bad, it's not knowing your status which is even worse. I'm fortunate that after my odd errors in the past I tested neg today and have made a promise not to have unprotected sex again.
Comment by: Pete
Tue., Jul. 21, 2009 at 6:58 pm EDT
I love this site, and it's openness to just get it off your chest. I was diagnosed Hiv+ just over a year ago now. At first, like many i completely freaked out and the first of my worries had been the question of whether i had infected my partner (at the time). Coming to terms with the recent diagnosis, as well as thinking about telling an a partner was a scary thought, and i just wanted to curl up somewhere and hide forever. It was easy to think about the negative things which i thought at the time were worse than what they are now. The partner at the time got tested a few times, but had not caught this. I was clearly over the moon about this, and from then on, i knew the reality was to deal with this awful situation by myself.
Telling people close had become easier, and i was surprised with the responses that i got. Of course i didn't tell everyone i knew as it's my business. I started to educate myself about the virus as i thought this would help when speaking to consultants and other people who i disclosed to. (Which certaintly helps when talking to doctors and nurses). I knew there would be challenges with telling future partners, and to be honest when i have talked about this to potential partners, some have freaked out the same way i did when i first knew. I expected that a lot of the time, or a response, such as 'so am i'. I didn't realise there were so many people with the HIV virus, until i started to talk about it. Be brave, and weigh up who you think you should tell, as long as its a safe feeling. Keep in touch with local groups and forums with people who are going through the same as you, as this really helps, mentally. Whatever, your decisions are, remember there is a whole big family of us out there and we can all give each other comfort when we most need it.
Pete from UK.
Comment by: Thobeeh
(South Africa - Durban)
Thu., Jul. 2, 2009 at 9:09 am EDT
Thanks for sharing your experiences with us guys, it heals our soul & emotions.I was diagnosized +tive when I was pregnant in 2003. I'm still not on treatment & checking my CD4 count every six months, living healthy life with my daughter who is negative & she will be turning 6 yrs on july 12. Thanking you for supporting us and keep doing the good work.
Comment by: Lost
(San Diego, CA)
Tue., Jun. 30, 2009 at 11:01 pm EDT
less than a week ago I found out I tested positive for HIV and I spent a day crying and in shock called my mom who in turn told my siblings. I turned heavy to my roommate who helped me cope and understand that life wasn't over. I threw a party the next day to be surrounded by friends. And now I'm fine. I
okay with it I still tear up now and then but overall ok. Is that normal. Should I be more sad?
Comment by: Leo
(Rio de Janeiro, RJ)
Mon., Jun. 22, 2009 at 12:17 am EDT
I'm 31 y.o. and I found out I'm HIV+ around 1 month ago. I also found out that the infection was very recent, since the "positiveness" wasn't detected by the average tests (they were inconclusive). It was detected only when I did the VIRAL LOAD test (which BTW was over the sky - but my doctor told me they'll go down and will stabilize at some point).
Between the first tests and the last one, in the very first days I felt weird. Didn't want to wake up. I wanted to stay in bed all day long. I felt so small, like a little bug in a huge desert. But so far I haven't cried yet. I believe I'll cry at some point, may be in a few days, maybe in a month, but I will. And I believe I need to cry at some point to "wash it away". Like crying will be a ritual for me to get over it and face the reality from now on.
Also, I would like to share that I had the luck to have found it together with my mother. I actually found out because I was with another health issue and she went to the doctor with me. She was there when he asked me to take the exam together with a bunch of other tests (he wasn't suspecting that I was positive, he told me he asked for the test just to be safe and he was very surprised with the result, since he wasn't expecting it at all. He even suspected I was a false positive due to the other health issue I was facing...). Anyway, my mom was with me all the time and she has been with me 100% since we found it out. Her support was crucial to me and the way she dealt with was the best I could ask for.
Besides my mom, I've told only a friend, and she, in the first days, totally ignored the subject. She acted as if I never mentioned it. It was very hard to me not having a single feedback from her. But we've talked about it and now we're both ok with that.
Finally, my biggest fear now is regarding my love relationships. How to protect my future partners and how to deal with the fact that I'll have to share with some of them this information.
Comment by: MSC99
Sun., Jun. 14, 2009 at 11:11 pm EDT
Hello, All when I first found out I was torn.. I didn't know which was was coming or going. But having a friend that had been going through the same thing gave me faith to move on with my life, even though I struggle with it from time to time I put it behind me and life like like there is no tomorrow. Technically no one is promised tomorrow.. Always keep you head up. Never let anyone tell you that you should tell your family, only if you want to and think you will get the support you need, but remember in the end it's just you...... "Take care of yourself and each other"
Comment by: Eddie
Sat., May. 30, 2009 at 11:55 pm EDT
I just starting dating someone since I found that I was HIV+.. We have not made anything too official yet.. would it be a good idea to tell him? Any feedbacks would be greatly appreciated.
Comment by: Mike
(San Francisco and Stockton , CA)
Fri., May. 8, 2009 at 5:24 pm EDT
Ok here is the deal... I met a young guy 28 (I am 36) about 2 weeks ago. He is Curious and I have shown an interest in him. He is on the shy side and uncomfortable. I had planned to pick him up from work and take him home. I had sent a text message, got no response, left a voicemail. no response. 3 to 4 hours later I got a 1 liner text.... I have to tell you I have HIV.
I myself am HIV-.
I have to tell you I was not expecting that...I was a bit shocked but I hold no judgement against anyone.
So now for the QUESTION? Has anyone had a similar experience? By him texting the message was this easier than telling me in person? ( I took him home an hour later) Should he have told me in person??....or even told me at all??
I do have to say that I think he is a VERY BIG and BRAVE man to come forward not knowing how I felt about the subject or how I would react whether it positive or negative.
On the trip home (1 1/2 hours in the car) I brought up the subject of the text message. He told me that he never talks about it. I told him it would not change my feelings or views about him as a person or a new friend. I do feel honored in a way due to the fact he does not talk about it to anyone.
I have many friends and a family member that are HIV+. Most of them took years to tell me and did not feel comfortable doing it.
I am happy to have a new friend! that I hope understands that was a HUGE step for anyone but even BIGGER for him because he doesn't really know that well.
Thanx for reading! Please let me know what you think of the situation. Mike
Comment by: joshua
Tue., Apr. 28, 2009 at 2:26 pm EDT
I found out i was positive with HIV April 7, 2009. I couldnt believe it, ME. I still can't. What keeps me going is that I know there are great people in my life that are here for me. So far only 3 people that are close to me know and it does hurt but i know i will get though this ugly feeling i have inside. Thanks to this site and the people that like me that leave comments, i feel less afraid and more aware of the things i can do to stay as healthy as possible.
THANK YOU EVERYONE!
Comment by: john
Mon., Mar. 30, 2009 at 7:09 pm EDT
I know where `Jason, Charlotte NC` is coming from when he speaks about the tears!! i was diagnosed just over 1 week ago. I spent the first 2 days crying ... and still I well up from time to time but I confided in 2 good friends!! You just need a small support network.... and do your best to be strong.. some people die of cancer weeks after being diagnosed... some people die suddenly in car accidents..we have the choice to continue living!! It`s just a question of being strong!! I say the virus is in my body.. nothing i can do about it now ... but it`s not in my head... i will not let it break my spirit...Keep going day by day... and life can be ok... very good even!!! Don`t give up!!
Comment by: Jason
Sun., Feb. 22, 2009 at 8:26 pm EST
I was tested in March and three months prior to that. They were both negative. I was more afraid then to hear my results than two days ago when I found out I was positive. I've been on and off with tears, and keep constant pains in my stomach and minor head aches. I'm turning to this page as a much needed stress reliever. I do feel much better hearing your stories. Thank you for your courage. Thank you for my peace at mind.
Comment by: karma
Thu., Feb. 19, 2009 at 9:40 am EST
Death is for sure and it comes without warning. Can anyone say that you won't die tomorrow?
Everybody is going to die one day or other, just the fact is the time, some die early some die later. So, we know about death from birth and so should accept it as part of life.
Our bodies die, but not the mind, be good, do good to all living things when living, these good deeds of our mind is the only thing that will lead us to next good life.
So, do not worry for what you have, it's just a disease like others. So, take care of yourself and i am certain that with the modern medication facilities, every HIV patient will be able to lead a normal life expectancy provided if you take good care of tour health.
may god always be with you.
I love you all more than my own son, i mean it.
Remember one thing, do not think of the past, it is the main cause of all sufferings in this world, but try to think good to others and it will pour you with lots of happiness. We should always be happy to be born as human and feel lucky when compared with the animals arround us (they too are living beings).
bye and take care.
Comment by: Loving Me
Sat., Feb. 7, 2009 at 6:57 pm EST
When i told my family, there was more tears flowing then a river....but they are the ones that took me from my death bed to undetectable. Friends, i have not told I am so comfortable with dealing with MY situation, but the words never come out when i try to tell someone else. My partner (ex) was with me when i found out and promised to never tell a soul. Getting back into the dating scene is so hard. I know i have that responsibility, but its easier to just be single and not deal with possible rejection. Anyone can say if they don't accept me then they are not the ones for me. That may be true. That IS true. But in all honesty, sometimes the truth hurts
Comment by: shelley write
Thu., Feb. 5, 2009 at 10:00 am EST
i believe that hiv is a very important thing to know about. also it can be very easy for a young female to get. so i got very interested to know more about how it could happen to a young female just so easily. i am only 14 years old and i am myself is having sex but once or twice i didn't use a condom. i believe that it is important that young girls should use a condom. the safer the sex the safer the living that's my opinion. and to you all that is a good thing that you do express your feelings to someone that you really trust.so thank you for sharing all the things with me about having hiv that is a very important thing. god still love's you for who you are and not for what you have. i have got pregnant at this age 14 but i had a miss carrege. be careful to all of you, you do deserve to live. remember one thing don't make you miss life.
Comment by: belinda maswanganyi
(south africa jhb)
Wed., Jan. 28, 2009 at 4:17 am EST
after reading all your stories i now feel better and ready to tell my family about my status. when i first found out that am hiv positive, i was scared and didn't know what to do or who to tell. thank you for sharing your story with us at, least am not alone on this situation.
Comment by: Sebastian
(Buenos Aires, Argentina)
Wed., Jan. 21, 2009 at 6:27 am EST
Thanks Heidi Nass for your writting your story. I feel now in the same place as you did, and now I don't feel so alone in this. It was nice to read, a very down-to-earth events without mentioning "god" or "love", but instead you mention "respect". Thanks a lot. Sebastian.
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