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Matt Merry does not keep in his memory the exact words used by his mother to tell him that he had HIV.
Just remember that he did not know how to react. At least not at first, in front of his mother.
He had sat at the table in the living room of his house in Rugby, England, to announce the news. Matt was then 12 years old.
He had been living with the virus for four years, his mother had explained to him
. He had been infected with an injection that had been given to him to treat his hemophilia, a blood disease diagnosed a few years later.
It was in 1986 and we were in the midst of the AIDS epidemic, and a diagnosis with of HIV was received just as a death sentence.
Once the first signs of infection appeared, he would probably live another two years, the doctors then told his parents.
That night, lying in bed with the lights off, numbness. He had felt all day long and was starting to fade and Matt began to feel the weight of what he had just been told
All I knew about HIV and AIDS was pictures of young skeletons, of bodies covered with wounds, who die in hospital hallways. And he started crying.
"Since then and throughout my teenage years, I have felt that I had on my head a clock in mode of countdown and that at any time someone could, "he recalls,
but his mother told him something else: he should not tell anyone. No friends, no teachers … first, not even his little brother.
An indescribable secret
When he returned to school, he took away with him a secret that 's no secret. he could not share
1986, people living with HIV or AIDS were subject to a perverse and visceral fear
In the media, the disease was associated with drug addicts and homosexual men , who were continually stigmatized.
Analyzing now, Matt believes that his parents did what he had to decide to keep him sec ret.
"In reality, it was not a real option to let people know," he says.
Sometimes other classmates got involved with him because of his hemophilia. So you can not imagine what it would be like if they had known about their HIV diagnosis.
Thousands of people had already contracted HIV from tainted blood, and Matt had heard about it in some cases. school parents took the children out to find out that there was a person with hemophilia in their class
But the weight of his secret was very big.
"You feel so alone in crossing it alone, without being able to speak or comment with anyone …", he recalls.
"Why get tired?"
They never offered therapy or psychological support
"I guess I could have talked to my mother or my father, or my brother, but it was so annoying that I did not want to talk about it because I knew I was going to cry. " A ] yes I locked myself in and went from the front. "
For his friends and comrades, everything seemed normal. Nobody knew what was going on in his head. But he was certain that he would have died before turning 20 years old. I could never have a girlfriend, or get married or have children.
Over time, he knew that he had also been infected with hepatitis C.
With this scenario, Matt stopped working at school. Total, why?
"Why spend all this time doing homework if I do not want to make a career or anything?" He thought.
Unwittingly, Matt was involved in what is considered the biggest scandal in the history of the United Kingdom's public health system (NHS, for its acronym in English) .
According to militant organizations, at least 2,800 people with hemophilia died of the use of medical articles with tainted blood, and other tens of thousands of non-hemophiliacs have been infected with different viruses.
Treatments with "factor VIII"
In the 70s and 80s a new treatment for hemophilia based on protein injections called factor concentrates, usually factor VIII, which helped blood clotting .
These products were made from donated blood plasma and there was so much demand in the UK. United that the NHS began to import from abroad, especially from the United States.
But Matt and his family did not know that much of the American imported Factor VIII was made from plasma donated by incarcerated people or drug addicts, considered high-risk groups for contracting such diseases. as HIV or hepatitis. C.
In many cases, they had been paid to make these donations. And since these products were made in large quantities from the plasma of tens of thousands of people, with whom only one donation was contaminated, was the whole lot.
As the crisis of the 1980s, the UK Department of Health received written alerts that products from the United States had to be withdrawn. But the measure was not implemented until 1986, years after the first warnings.
When Matt's mother learned that her son had been infected with HIV, he did not even know that he had been tested.
As there was no tomorrow
Nobody in Matt's school circle knew why he had made such bad grades.
The years before the university had gone to "having fun with friends".
Despite the prognosis of two years of life, and not counting his hemophilia, Matt was in good health
In 1990, just after the age of 16, a doctor gave him a psychiatric evaluation
"Try not to think about the future and, when you do, do you feel hurt and try to distract yourself. "
They also described that Matt had a strong mechanism of psychological defense " but that" it was easily transferable and, when that happened, he became clearly anxious "
According to the psychiatrist, the following years, it was likely that "Matt would suffer from great emotional difficulties", whether or not he has AIDS disease
"It will be difficult to establish satisfactory relationships with the opposite sex given the real danger of transmission of infection," he adds. "He is already worried about this and [1999010] is discouraged by the fact that he will not be able to have children."
Refuge on Drugs
This is at that time Matt started smoking cannabis. Later, he consumed other synthetic drugs such as speed and ecstasy.
It was the early 90s and Matt became full on stage rave Dawn
When his parents finally found out, he told them, "And why I do not have much time left I want to try to enjoy as much as possible before dying ".
It was not easy to disassemble this argument
One night, when he was 17 or 18 years old and after a night of drinking in town, he went home with a friend and something encouraged him to tell him that he had HIV to someone outside his immediate family environment for the first time.
His friend was shocked, but he was very understanding.
Matt was very relieved. For the next three or four years, he began talking to his closest friends individually. Over time, talking about it has become easier and has never found a negative reaction from any of them.
When he was 20, Matt saw how many of his friends were going to study at the University of Birmingham, so he went to live there just to keep partying.
Then he had the feeling that he was starting to stay behind. His friends were advancing from their lives, graduating, forming couples … but he was not doing it.
There was no specific moment when he had a revelation, but little by little he began to think: "I've had it since the age of 8. And they m & # 39 have always said that I had two years to live ".
"And if it was not two years old? And if it was longer?" "
He had never been to her at any time. mind that he could maybe reach 50 or 60. Then he realized that he had to do something in case he would end up living another ten years.
Going Out
So he enrolled in a course at the University of Birmingham and, for the first time since his diagnosis of HIV, he made an effort in his studies and got good notes.
"For me, it was a turning point," he says. "I thought," I can really do that. ""
And a first degree took him to a baccalaureate.
Meanwhile, medical examinations continued. Normally, HIV kills CD4 cells, but their blood levels showed adequate levels
What started to give him problems, was his hepatitis.
A biopsy revealed that his liver had scars and was damaged, a hard treatment with very potent drugs, ] ribavirin and interferon to try to get rid of the virus.
After 12 months, the doctors had good news: was free of hepatitis C. ]
C & It was at that moment that Matt took a momentum and went to Australia, the furthest place of his life in Rugby and the people who knew him forever. . Illustration. "Height =" 549 "src =" https://c.files.bbci.co.uk/16F8A/production/_102709049_doors-graveyard gray.jpg "width =" 976 "/>
"I think I made a trip to get me away from myself," he says.
"I wanted new people who did not know me, I could be someone of different, I could basically forget everything that had happened to me … years and the emotional charge that he wore. "
Tell people that they had HIV seemed easier there. He met them only for a short period of time
began to contemplate for the first time the idea of having a romantic relationship. Her parents had always had the idea of talking about their health to potential partners and giving them the opportunity to break the relationship.
But it was much more scary than telling close friends
. some girls, but the relations did not pass small summer business.
2000: Homecoming
Matt returned to England shortly before Christmas 2000. And at that time he began to think that he might live long
"I think that traveling I've helped a lot, "he admits. Among other things, to get rid of prejudices about HIV
And with the advent of antiretroviral therapy, people have stopped thinking of HIV as an automatic death sentence. This helped
In 2003, during a trip to a bachelor party, Matt met a girl with whom he exchanged phone numbers.
They quickly started dating. Already at the beginning of the relationship, Matt mentioned that he had HIV and that he was ready to be rejected. But that did not baffle him.
In 2008, they were married. "He did not care less about it."
A New Life
If finding a partner was more than imagining for him, having children had seemed totally unthinkable
"I thought it was physically, medically impossible ", says.
But one of his childhood friends, who was also a hemophiliac, told him that he had been a father through a technique called washing sperm a form of [19659005Mattwasinterestedinthistechniquebutwassurprisedwhenanexperttoldhimthatsincehisviralloadwasvirtuallyundetectable it would be safe for them to have a baby naturally.
"I could not believe what they said," he says. "I thought," Do you know what I've lived for 15 or 20 years? ""
"But fearing the slightest possibility of transmitting the virus to my son, after my own experience, I did not want to take any risk" "
" So we did three cycles with this sperm washing technique and we had a child, then we went back to repeat it for the second.
Being a father changed Matt's life.
Now, seeing that his children are approaching the age at which he was told that he was sick, makes him think of the magnitude of what has happened to him.
"It's the only time I've got excited," he says. "It makes me angry, it's like an inappropriate anger. As if it were made for my children, not for me. "
A lottery
How would you react if you were told today that your children are two years old to live? "God, I do not know what I would do, only God knows how my parents felt."
After decades of lobbying by activists, the British government is about to open a Public Inquiry into the Scandal of the
He never ceases to be surprised when he looks at his own story.Of the 1250 patients estimated to have been infected with hepatitis C and HIV by this scandal, less than 250 are still alive, according to the organization Tainted Blood
"In terms of death, it really is as if I had won the lottery "he says
Matt believes that despite the large number of victims, the scandal has not attracted much attention to because of the stigma surrounding HIV and AIDS. And for that, he wants to tell his story.
"I am happy in my life right now: I have a big family, with a wife and two wonderful children."
"I have every reason to be grateful. But I should not be grateful for that" concludes
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