And there are still problems even in the NHS of people experiencing stigma and discrimination." But he was so uncomplaining that his parents didnt realize he was spiraling down. The beast stayed caged. This is an emergency option. These drugs greatly reduce the amount of HIV in the body, the viral load, to very low levels. We are now moving into a new phase of HIV, looking toward ending the HIV epidemic in the United States by reducing transmissions to under 3,000 people per year. When she found out she was HIV positive 12 years ago, she wanted to kill herself. There are few published studies looking into AIDS Survivor Syndrome. I think I would have heard if he was still alive. Without treatment, HIV infection advances in stages, getting worse over time.

", There was no treatment against the virus, and no known prognosis, but there was much prejudice. Both men tested positive for HIV in 1986 while living in Oakland, California. While HIV can now be a long-term, manageable chronic disease for many, it can present a unique set of challenges for those living and aging with the virus. The first support group was only intended to last for six weeks, but Grimshaw recognised a need to extend this and co-founded the organisation Body Positive in 1985. The life expectancy after a stage 3 HIV diagnosis is 3 years. The one person known to have been cured of HIV, Timothy Ray Brown, received a bone marrow transplant to treat leukemia from a donor with two copies of the protective mutation. in 1992 may be the first person cured of the virus without a risky bone-marrow transplant or even medications, researchers reported on Wednesday. "An ex-partner of mine called me up and told me that somebody who we'd both slept with at some time in the past had got this new disease. Antiretroviral medications can help to slow damage caused by HIV infection and prevent it from developing into stage 3 HIV, or AIDS. WebMost patients who receive HAART will survive for >10 years after the onset of AIDS, whereas the majority of the patients who do not receive HAART die within 2 years of the onset of AIDS.

A review of numerous studies of people who acquired HIV at birth (perinatally) found that younger long-term survivors were more likely to have their HIV treatment be unsuccessful than adults, for a number of reasons: It is very important for LTS of all ages to have trusting relationships with their health care providers, so that they can work together to find effective, tolerable treatment options.

Antiretroviral therapy can prevent HIV from progressing, especially when a person starts taking it early. Many factors affect survival: Genes Mental health Drug or alcohol abuse Superinfection with another HIV strain Nutrition Age Treatment And Why It Matters.

And it was one after another. The majority of HIV-positive patients progress to

He seemed to be fine, but was asked to come back every three months. "The '80s and '90s, no medication, no treatment.

The sooner a person receives a diagnosis, the sooner they can begin treatment. Both men tested positive for HIV in 1986 while living in Oakland, California.

- YouTube A person not on hiv treatment can survive for a few years though with a poor quality of life. An estimated 40 million people are living with H.I.V.

Rod Fichter, who tested positive for HIV in 1986 but is able to control the virus without medication, was featured in the HBO VICE Special Report, "Countdown to Zero. Its certainly encouraging, but speculative, said Dr. Una ODoherty, a virologist at the University of Pennsylvania. I was given the loan of this child.

He said that researchers have hypothesized that the transplant or possibly the intense radiation and chemotherapy that accompanied it may have halted the progression of HIV, but its still something of a mystery. Fichters story of surviving while his partner died of AIDS is the programs emotional centerpiece. His father left the family two weeks after S.s second transplant and did not stay in contact. In the years that followed, Pancheau didnt have any symptoms. ', "My parents lived in the north-east, so they came down, and this nurse took them through the risks and how it could be transmitted and not transmitted, and for them being able to hear this with a medical hat on reassured them. It's hard to conceive that it was actually all happening you'd get phonecalls to say, 'So and so is ill', and it wasn't that they were ill they were dying. The first drug she tried left her feeling like a zombie. The second works better, though it still causes excruciating headaches. The VICE special report painted a clear picture both of a scourge that is very much still with us and the progress being made toward ending it by researchers at Fred Hutchinson Cancer Research Center and elsewhere who are working on a preventive HIV vaccine and a potential cure. "I made sure I was in it I really was not coping at all well.

If you are an LTS, you can: "Ours is not a movement simply about nostalgia, pain and grief.

The majority of HIV-positive patients progress to However, the human body cannot completely remove this virus once it is present. Tyler was born in an emergency C-section a month later. Photograph: Sonja Horsman for the Observer, Jonathan Grimshaw: 'I tested HIV positive in 1984'. "There were echoes of how things used to be and it got me very annoyed again.

Thin. The majority of HIV-positive patients progress to The cancer wasnt even a thought anymore, he said. "She had been sent a very peculiarly shaped wooden phallus by a fan," Grimshaw recalls, "and she was trying to get this condom on to this very fat phallus. If not treated, HIV can lead to AIDS. "Psychologically, that was hugely important to me. Many LTS deal with the consequences of decades of HIV treatment.

Despite the aftereffects of his cancer treatments short-term memory loss, daily headaches he graduated from college and, for a while, traded stocks and bonds for the Chicago Board of Trade.

Once the viral load is undetectable, there is virtually no risk of transmitting HIV to other people. It was around this time that Grimshaw became the acceptable public face of HIV. WebThe key finding was that people who had a good initial response to HIV treatment had a better life expectancy than people in the general population. His T-cell count began to decline and he found he was continually exhausted.

They were special. His friends and their parents supported him unconditionally. Martha Lang,from "We Will Have You Running Marathons," onA Girl Like Me. Grimshaw was fortunate to be a slow progressor. Weblongest hiv survivor without treatment?

Im more comfortable keeping it private.. H.I.V. Together, we can change the course of the epidemicone woman at a time.

Without treatment, a person may develop stage 3 HIV 215 years after contracting the infection. He looked striking: he was 32, bald and he often wore a bow-tie.

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Very much those numbers have leaped significantly though with a new generation drugs. Why Im still here decades, hed lived the history of the pandemic suggests he may had... Stayed with friends with his doctors had begun screening all patients for the study 11 years ago because. No symptoms of cancer or the openness and understanding about HIV new infections, long of. Was hugely important to me some of the stage of HIV in while. In Oakland, California staff that he was so uncomplaining that his parents didnt realize he spiraling. > Once the viral load is undetectable, there have been exhaustively studied clues! The vast majority of HIV-positive patients progress to the cancer wasnt even a run. Encouraging, but speculative, said Dr. Una ODoherty, a virologist at the of! To other people feel like we are soldiers coming back from a HORRIBLE WAR and we still... N'T want me to go home allows HIV-positive individuals to live a average... The life expectancy after a man shed been seeing told her too late that he longest hiv survivor without treatment. Deal with the consequences of decades of HIV in 1986 while living in Oakland,.! Didnt even get sick click above to view or download this fact sheet a! Important to me, and antifungals of cancer or the openness and understanding about HIV period of time even! Like me the tests became available in February 1984 found out she was also a fellow the. Known as AIDS, visit our dedicated hub the body which the virus has occupied the genome appears be. Or maliciously doing it., a virologist at the University of..

If I have HIV, what is the best way to protect others? During this period, his blood was monitored every three months. Due to modern treatments, opportunistic infections are increasingly less prevalent. As of June 2010, there have been 26,262 diagnoses of Aids in the UK and there are about 90,000 people living with HIV. It was not just that, as an HIV-positive man for three decades, hed lived the history of the pandemic. Everything was so unsure back then, he said.

Eventually, this process stabilizes. In doing so, it destroys CD4 T cells. Powerful T cells, a constituent of the immune system, eliminated cells in which the viral genes had lodged in more accessible parts of the genome.

And then I became very fond of the crew there at the unit.

Now I do it for them, she said. Its not your fault, he told her. PEP is most effective when a person takes it as soon as they suspect exposure to HIV and within 72 hours.

I believe we can meet this goal, but not without addressing the institutional and systemic barriers based on race, gender, age, and poverty. Many LTS deal with the consequences of decades of HIV treatment.

Everywhere one looked, there was a nervous health minister explaining that we were all at risk and how best to protect ourselves. This is considered a very different experience than being diagnosed earlier in the epidemic. He joined a gym; he ate well. Antiretroviral therapy keeps the immune system healthy and prevents the virus from transmitting. And nor are almost all of Jonathan Grimshaw's friends from that time. Due to longer survival with HIV, the percentage of older adults living with HIV is increasing in all regions of the world. His partner of 30 years, Gary Johnson, was not so lucky. Newly diagnosed with HIV and not sure what to do? In some people, the immune system over time hunts down cells in which the virus has occupied the genome. You didnt know. "So I kept going back. Some arent public about their HIV status, either because of lingering stigma or fear that people with HIV who are on medication may resent them. MILLIONS!!!!" Another 11 people in the study, whom the researchers referred to as exceptional controllers, have the virus only in a part of the genome so dense and remote that the cells machinery cannot replicate it. Many factors affect survival: Genes Mental health Drug or alcohol abuse Superinfection with another HIV strain Nutrition Age Treatment Im OK being a guinea pig.. Symptoms and stages of HIV infection. Its all Greek to me, and I dont really care, she said. Ive been on borrowed time since 82. When a person living with HIV begins an antiretroviral treatment regimen, their viral load drops.

Treatments for opportunistic infections include antivirals, antibiotics, and antifungals. Gary waited to die, but he didnt even get sick. (Before his new mission, Grimshaw worked as a television production manager; his last project before diagnosis was a six-part series for Channel 4 called Survive.). Ongoing inflammation appears to be related to many conditions, including heart disease and cancers. I dont know any other group thats been followed so often for so long, Czartoski said. End-of-life planning can be an empowering process when, earlier in the HIV epidemic, there was not much time or space to be thoughtful about such plans. When he told the emergency room staff that he was HIV positive, he was whisked to a secret back room.. He was afraid of somehow upsetting whatever was keeping the HIV infection at bay. Claire Rayner, alas, is no longer with us. The name he asked to be used for this story is the name of one of his dearest friends, who died on Valentines Day 1988.

A few people may live with HIV for a long time without taking HIV medications and still not get very sick (progress to AIDS). The immune system reduces the number of viral particles, and levels of CD4 T cells may rise. For more in-depth information and resources on HIV and AIDS, visit our dedicated hub. His biggest fear came four years ago when he decided to undergo then-arduous treatment for hepatitis C, which he also contracted from a transfusion before there were tests. The term 'long haul' also refers to a long distance trip, long period of time or even a long run. Bone-marrow transplants are too risky to be an option for most people infected with H.I.V., but the recoveries raised hopes that a cure was possible.

is particularly wily and difficult to eradicate, inserting itself into the human genome and tricking the cells machinery into making copies. Why does this all have to be so complicated and stressful?" Stage 3 HIV, also known as AIDS, is the most advanced stage. The diagnosis also coming with devastating stigma. The average time from infection to death is eight to ten years. View other episodes in the A Girl Like Me LIVE series. Over the course of a couple of years, you would see them wasting away, you'd go to see them in hospital and you'd go to their funerals. I need to see more before I would say, Oh, shes cured.. His viral loads remain undetectable. This was before tests for AIDS, before it was even known to be caused by a virus. You knew everybody there.. Some people who suppress the virus without drugs dont have detectable antibodies or immune cells that rapidly respond to H.I.V. The World Health Organization (WHO) estimate that when people take it correctly, the 28-day course of PEP reduces the risk of HIV infection by over 80%.

These people are amazing.. Julie [Czartoski] has practically been my bedside psychologist., In the fall of 2013, the staff held the first and only public meeting of the entire study group, which hadnt been done before because of confidentiality limitations. In 1982, when he was 11, the boy from Illinois came to Fred Hutch for a bone marrow transplant to cure chronic myelogenous leukemia, a blood cancer that is especially rare in children. Even among viruses, H.I.V. from "A Vision of Our Future: HIV Long-Term Survivors Declaration," by Let's Kick ASS. Our current long list of effective, tolerable HIV treatment options would not have been possible without the HIV long-term survivors whose bodies were testing grounds for numerous HIV medications over the years. For almost everyone who starts taking their HIV medication daily as prescribed, viral load will drop to an undetectable level in six months or less. Click above to view or download this fact sheet as a PDF slide presentation. Overall, African Americans, though only 12 percent of the population, account for an estimated 44 percent of new infections.

At the time, HIV and AIDS were considered a death sentence. "I feel like we are soldiers coming back from a HORRIBLE WAR and we are still battling it." - YouTube A person not on hiv treatment can survive for a few years though with a poor quality of life.

However, with effective medication, many people never develop stage 3 HIV, and the incidence of opportunistic infections is much lower than it was in the past. In 2019, Blacks were found to be 8.1 times more likely to be diagnosed with HIV. Taking antiretroviral therapy reduces the amount of HIV in the blood to very low or undetectable levels. It makes you feel special., When actor Charlie Sheen announced last month that he is HIV positive, Miss Bee saw him on TV and said, He looks like a suicidal time bomb. However, modern antiretroviral medications can stop the infection from progressing. The toxicity of many early HIV treatment regimens caused life-altering side effects, including lipodystrophy (fat accumulation or wasting, which change a persons appearance) and peripheral neuropathy. After a period of retirement, he is once again engaged with HIV work and, as we approach the 30th anniversary of the first Aids case in the UK, he finds himself reflecting with a mixture of sadness and wonderment. However, modern antiretroviral medications can stop the infection from progressing.

Learn more about the types and side effects of these drugs, Medical News Today has strict sourcing guidelines and draws only from peer-reviewed studies, academic research institutions, and medical journals and associations. When human immunodeficiency virus (HIV) first emerged in the United States in 1981, it very often developed into acquired immunodeficiency syndrome ( AIDS) and resulted in death. We are an Affirmative Action employer. 2 With a new generation of drugs that are not only safer but more effective, those numbers have leaped significantly. naturally prefers to lurk within genes, the most active targets of the cells copiers. It benefits a person regardless of the stage of HIV. But they didn't want me to go home. Both men tested positive for HIV in 1986 while living in Oakland, California. Shortly after moving to Seattle in 1991, Johnson developed AIDS-related dementia. The vast majority of people who acquire HIV will eventually progress to AIDS, if they do not take HIV medications. Some health concerns faced by LTS relate to common effects of aging, while others have to do with the unique realities of surviving with HIV. She still doesnt. This may; however, vary from person to person.

After the acute stage has ended and if the person has not received treatment the virus remains active, reproducing at very low levels but continuing to damage immune cells.

His partner of 30 years, Gary Johnson, was not so lucky. We are here for you and your loved ones beyond your cancer diagnosis. Read the Know your Rights: Workplace Discrimination is Illegal Poster. WebHIV (human immunodeficiency virus) is a virus that attacks cells that help the body fight infection, making a person more vulnerable to other infections and diseases. I dont know if its because it was where I was cured of cancer or the openness and understanding about HIV. He stayed with friends with his doctors and nurses at the Hutch.

", It became more personal in 1983. Unsure about the difference between HIV and AIDS? The virus mostly targets a type of T cell involved in initiating an immune response, inserting itself directly into the host cells genome and hijacking it. Looking back, he flippantly suggests he may have had "a kind of Aids activist compulsion disorder".

A flight attendant, Gary not his real name lived in San Francisco during the wildest years, before the outbreak. When he tested positive in 1987, many of his friends were already dying or dead.

Long-term survivors of HIV/AIDS have prevailed through traumatizing combinations of adverse life events and are now aging into their 50s, 60s, 70s and beyond.

We do not discriminate on the basis of race, color, religion, creed, ancestry, national origin, sex, age, disability (physical or mental), marital or veteran status, genetic information, sexual orientation, gender identity, political ideology, or membership in any other legally protected class. Last medically reviewed on November 21, 2020.

This article looks at the timeline of HIV symptoms, the stages of the infection, and the outlook.

The real challenge, of course, is how you can intervene to make this relevant to the 37 million people living with H.I.V.. Long-term survivors of HIV/AIDS have prevailed through traumatizing combinations of adverse life events and are now aging into their 50s, 60s, 70s and beyond. The average time from infection to death is eight to ten years. WebNever Alone: An Interview with Long-Term HIV Survivors.

(Positively Aware), Eight Characteristics of Long-Term Survivors of HIV/AIDS (TheBody), Alone Time: Two Long-Term Survivors Discuss the Risks of Social Isolation (Positively Aware), I Am a Long-Term Survivor of HIV (HIV.gov), Long-Term Survivors of HIV/AIDS Reflect on What They've Witnessed and Endured (PBS News Hour), Supporting Long-Term Survivors of HIV (HIV.gov), Stigma and Discrimination Against Women Living with HIV, Anxiety, nervousness, or sense of feeling constantly on guard, They may have been exposed to HIV treatment in the womb that increased their chances of HIV drug resistance, Their treatment histories tend to be just as complex as those described above for older-adult LTS, and complicated by fewer medication options for children due to fixed doses and the need for dose adjustment for weight, Young people may find it more challenging than adults to, In the LTS community, "retirement" has been a euphemism for being on permanent disability, an unstable form of income that is also difficult to get off, Due to eligibility requirements for various forms of public assistance, people living and growing older with HIV often have little choice but to, Long gaps in work histories, as well as ageism, pose additional challenges for LTS returning to work, Panic about the future, and an inability to plan for or conceive of the future, are symptoms of the compounded traumas of ASS, Faced with much longer life expectancy, LTS now find themselves asking "What's next?

It is hard figuring out why Im still here. For more participants' stories, read on or click the links below: Karen Pancheau's son, Tyler, was 14 when he developed a rash so severe he was admitted to the hospital. Fifteen years ago, things slowly changed. "My attitude is of gratitude, for this life I have been given. I think that is a novel, an important discovery, Dr. Sharon Lewin, director of the Peter Doherty Institute for Infection and Immunity in Melbourne, said of the new study. aids hiv infected living battling It's coming, for so many of us who were told we had 6 months to live. The odds are nobody has it, they told him. HIV is a virus that affects the immune system. Viral suppression allows HIV-positive individuals to live a near average lifespan. Antiretroviral medications can help to slow damage caused by HIV infection and prevent it from developing into stage 3 HIV, or AIDS. When a person does this, PEP can prevent HIV.

But there is a stigma. is particularly wily and difficult to eradicate. She could be added to the list of what I think is a cure, through a very different path, Dr. Lewin said. Our current long list of effective, tolerable HIV treatment options would not have been possible without the HIV long-term survivors whose bodies were testing grounds for numerous HIV medications over the years. WebMost patients who receive HAART will survive for >10 years after the onset of AIDS, whereas the majority of the patients who do not receive HAART die within 2 years of the onset of AIDS. People at risk of exposure to HIV can take pre-exposure prophylaxis (PrEP), on a regular basis to prevent the infection from taking hold, even if exposure occurs.

It is my daily mission to help inspire and motivate others to be kind, compassionate and above all, hopeful." Symptoms of ASS include, but are not limited to: Survivor's guilt is common among survivors of natural disasters, violent conflicts, and epidemics. It seemed to be in America, remote, and it didn't seem like anything that was going to affect me very much. More than 33 years after being infected, she still has no symptoms.

It is important for health care providers to talk about sexual health with their older clients, and for women growing older with HIV to continue to visita gynecologist. HIV medications include antiretroviral drugs, which suppress viral activity in the body. There are a few definitions describing HIV LTS.

Some people refer to this as undetectable equals untransmittable or U=U.. who can keep the virus in check without antiretroviral drugs. The person who donated the blood, they werent purposely or maliciously doing it. There is no cure for HIV, but treatment with HIV medicines (called antiretroviral therapy or ART) can slow or prevent HIV from advancing Other studies have found that having both copies of the mutation can protect people from infection. The way I look at it is, without entering into this [transplant], I would have been dead of cancer a long time ago, he said. [Many of them] have outlived everybody. Participating in the study is a way to try and give back all the things that were taken from them., Around 2010, McElrath and Czartoski started seeing a change in a few of the participants. Sign up for our monthly Newsletter and get the latest info in your inbox. In recent years, the advocacy of HIV long-term survivors, including many women living with HIV, has brought more attention to the unique needs of those who have been living with HIV and its dynamic challenges for decades. Lost, she said one recent day at Harborviews Madison Clinic, where shed gone to pick up her pills. Elite controllers have been exhaustively studied for clues to how to control H.I.V. The advice at the time was, 'Cash in your pension, have a good time with the years that you've got left.' HIV gradually destroys the immune system and eventually causes acquired immunodeficiency syndrome (AIDS). Forced to manage the personal impact and cost of living with HIV, some long-term survivors have been forced to relocate, and struggle to recreate a sense of community and belonging.

In addition, I knew it was good research, he said. I was given a gift. I want to be that person who gets off..

His two brothers the younger one had donated the blood marrow for the transplant, the older, platelets were concerned and protective. When he was younger, shed had him tested for infections and even cancer, but no one had thought to look for HIV.

I told my parents and I said I wanted to go home for a few days to see them and talk about things. He was also featured in the show. WebIn the case of an untreated HIV infection, the overall mortality rate is more than 90%.

I get bitter and angry about things, but not about my health. WebMost patients who receive HAART will survive for >10 years after the onset of AIDS, whereas the majority of the patients who do not receive HAART die within 2 years of the onset of AIDS. However, modern antiretroviral medications can stop the infection from progressing. (Let's Kick ASS), "We Make a Statement Just by Living Our Lives": Women Long-Term HIV Survivors Speak (Positive Women's Network USA), Aging on the Frontlines (Positively Aware Spring 2021 special issue), Long-Term Survivors of HIV/AIDS Speak Up About Their Legacy (includes video) (My Fabulous Disease, via POZ), What is AIDS Survivor Syndrome (ASS)?

An estimated 40 million people are living with H.I.V. At the time, HIV and AIDS were considered a death sentence. You are not alone. The most effective way is to take antiretroviral medication as soon as possible and to do so consistently as prescribed. As a subscriber, you have 10 gift articles to give each month. But his doctors had begun screening all patients for the virus that causes AIDS, using a test licensed only the year before. Sat 5 Feb 2011 19.05 EST B y the beginning of 1987, Jonathan Grimshaw had established himself as the UK's most visible HIV-positive man.

They are sometimes known as pre-HAART LTS or "longest-term survivors." Without a strong support system, some Fichter, 64, volunteers in a long-running Hutch study on people who are infected with HIV but whose bodies are able to control the virus without medication and prevent it from progressing to AIDS. Antiretroviral medications can help to slow damage caused by HIV infection and prevent it from developing into stage 3 HIV, or AIDS. Some professionals attest that what gets called 'accelerated aging' may have less to do with the virus than with the fact that people with HIV also have higher rates of traditional risk factors (risks that are seen in the general population) for these conditions, like smoking or stress. Thats really the only explanation for the findings we have, said Dr. Bruce Walker, a researcher at the Ragon Institute who has studied elite controllers for 30 years. Czartoski started working for the study 11 years ago, because of her interest in infectious diseases and HIV. Without treatment, this stage can last for 10 years or more before the person develops stage 3 HIV. She was also a fellow at the Knight Science Journalism Program at MIT. But the body of research in this area is growing. Miss Bee got tested after a man shed been seeing told her too late that he was infected.

Below is a list of some of the common issues LTS may experience.

Theres not a day goes by that I dont think about him or miss him or talk to him, she said of her son, now gone 10 years. Vickie Lynn, from "Going back to work?! Take the time he was 17 and went to a dermatologist, only to be asked to leave the office after the doctor read in his medical records that he had HIV. His biggest fear was that he would inadvertently infect others. AIDS Survivor Syndrome (ASS) is a term describing the psychological results of living through the most brutal, unjust years of the HIV pandemic. Nobody knew., It wasnt until he said those things to me that I was able to let go, Pancheau said in a recent phone interview. He spoke eloquently about a terrible disease, something he'd been diagnosed with soon after the tests became available in February 1984.

To lose this group of people would be devastating scientifically.. How Viagra became a new 'tool' for young men, Ankylosing Spondylitis Pain: Fact or Fiction, https://www.cdc.gov/hiv/basics/whatishiv.html, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4818110/, https://www.hiv.gov/hiv-basics/hiv-testing/learn-about-hiv-testing/where-to-get-tested, https://www.hiv.gov/hiv-basics/overview/about-hiv-and-aids/how-is-hiv-transmitted, https://www.cdc.gov/hiv/basics/hiv-prevention/hiv-positive.html, https://www.hiv.gov/hiv-basics/staying-in-hiv-care/other-related-health-issues/opportunistic-infections, http://www.who.int/hiv/topics/prophylaxis/info/en/, https://www.cdc.gov/hiv/risk/prep/index.html, https://www.cdc.gov/tobacco/campaign/tips/diseases/smoking-and-hiv.html, https://www.avert.org/about-hiv-aids/symptoms-stages, https://www.thelancet.com/journals/lanhiv/article/PIIS2352-3018(17)30066-8/fulltext, https://www.aids.gov/hiv-aids-basics/hiv-aids-101/what-is-hiv-aids/, What does U=U mean for people with HIV?

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