- Vinicio Riva, 53, suffers from the genetic disease neorofibromatosis
- Condition has left him covered from head-to-toe in non-contagious growths
- Earlier this month Pope Francis embraced and kissed him in Rome audience
- Images of the touching moment the Pontiff held him seen around the world
- 'It was paradise. He didn't think about whether or not to hug,' Mr Riva said
- In an exclusive interview with MailOnline he has told the story of his life
476
View
comments
The severely disfigured man whose full-body tumours were lovingly kissed by the Pope has told MailOnline the moving story of his life.
Vinicio Riva, from Vicenza in northern Italy, is covered from head-to-toe in painful growths, a symptom of his genetic disease neurofibromatosis, passed down to him by his late mother.
Earlier this month the 53-year-old's picture spread across the world when he was warmly embraced by Pope Francis at one of the pontiff's weekly audiences in St Peter's Square.
Brave: Mrs Lotto says people, particularly women, make cruel remarks to Mr Riva when he leaves the house
Overwhelmed: Mr Riva's picture spread across the world when he was caressed by Pope Francis and he said it made his heart beat so fast he thought he 'would die'
Tough life: Vinicio as a young boy before his condition fully developed and then as the pontiff Francis kissed him
In an exclusive interview with MailOnline, the brave man has described meeting the head of the Catholic church, saying that being caressed by Pope Francis made his heart beat so fast he thought he 'would die'.
The pontiff's hug was 'like paradise', he said, adding: 'He didn't even think about whether or not to hug me.
'I'm not contagious, but he didn't know that. But he just did it: he caressed me all over my face, and as he did I felt only love.'
RELATED ARTICLES
Church 'is on the brink of extinction': Ex-Archbishop George... 
The Pope effect: New pontiff has seen huge increases in...
Share this article
ShareMr Riva recollected: 'He came down from the altar to see the sick people. He embraced me without saying a word. I felt as though my heart was leaving my body.
'He was completely silent but sometimes you can say more when you say nothing.'
'First, I kissed his hand while with the other hand he caressed my head and wounds. Then he drew me to him in a strong embrace, kissing my face.
'My head was against his chest his arms were wrapped around me. It lasted just over a minute, but to me it seemed like an eternity.'
Concern: Caterina Lotto (centre) fears her nephew Vinicio Riva (left) and niece Morena will be forced to live in a care home when she dies because they need her 'for protection'
Struggle: Mr Riva is covered from head-to-toe by the growths, a symptom of his genetic disease, neorofibromatosis
Famous: Earlier this month Mr Riva's picture shot round the world, when he was warmly embraced by Pope Francis, at one of the pontiff's weekly audiences
Painful: Vinicio Riva with a picture of his late mother Rosaria, who suffered from the same condition he does
Photographs of the touching embrace were shown across the world and drew comparisons to the 13th Centiry's St Francis of Assisi.
It was one of a number of public acts of humility carried out by Pope Francis that has inspired an increase in congregation numbers in Catholic churches across the world.
Since he was elected eight months ago, Pope Francis has been seen to wash the feet of juvenile delinquents, personally call distraught worshipers on the phone and invite homeless people to dine at St Peter's Square.
The so-called 'Pope Francis Effect' has been credited with a 20 per cent rise in Catholic congregations in Britain, and similar boosts in Italy, Spain, France, the U.S., and Latin America.
Family: Vinicio Riva's mother, who died of the genetic disease he suffers from called neorofibramatosis
The Italian Centre for Studies of New Religions say 'hundreds of thousands' of people have flocked to the church since his election.
Mr Riva was accompanied to the Vatican by his aunt, Caterina Lotto, 68. Afterwards he felt so emotional and his heart was beating so hard he turned to her and said: 'This is going to kill me .'
Mr Riva lives with his sister Morena, 46, in the council house they share outside Vicenza.
He has endured numerous operations on his heart, throat and eyes, and often gets short of breath as a result of his condition.
Mr Riva suffers from open wounds on his legs that bleed onto his clothes and always wakes wearing a T-shirt covered in blood.
His sister Morena also suffers from the disease, although from a far milder form. Their mother Rosalia was the genetic carrier that passed on the disease but she did not develop any symptoms until she had children.
Until the age of 15, Mr Riva was an unblemished, self-assured adolescent. But then the growths appeared all over his body, inch by painful inch.
Now his entire face and head are covered in the boils. Only his left cheek, which is warped, is free of the painful growths.
During an operation on his heart the doctors had to enter through the armpit to avoid the tumours which cover his torso.
His feet are deformed and devastated by the sores, which makes walking difficult. He rides to work and around the village by bike but visited the Vatican by wheelchair because of the long waiting time on foot.
The dermatology patient's mother, Rosaria, eventually died of the condition, aged 81, and Mr Riva himself was only expected to live until the age of 30.
Life-changing: Until the age of 15, Mr Riva was an unblemished, self-assured adolescent. But then the growths appeared all over his body
His father, 77, a former builder, who still lives in the retirement home where Mr Riva now works, seems to have been a somewhat authoritarian figure.
Mr Riva showed little affection to his son after he got sick and pulled him out of school aged 15 to come and work on the building sites with him. The dust made the boy's sores itch terribly.
Later the son went to work, painting in a ceramics factory and, in a specially assisted place for disabled people, assembling parts such as car batteries.
The dermatology patient's mother, Rosaria, died of the condition, aged 81
Family album: Mr Riva's father, 77, a former builder, who still lives in the retirement home where Mr Riva now works
When he is not working Mr Riva rides his bikes around the village. He is also a keen football fan and often goes to football matches or out for pizza with former classmates and friends.
He has not had a girlfriend since he was a young man after having his heart broken.
But despite the heartache Mr Riva enjoys reading romance novels. And he has also been known to bring flowers to the nurses at the clinics where he needs once or twice a week treatment.
He says he would like to meet a person who suffers from the same condition 'out of interest' but especially a woman, for a possible relationship.
The big-hearted volunteer has often been shunned in the street as an 'Elephant Man', with mothers crossing the street to avoid him. Surprisingly, the women can be worse than the men, he said.
On one particularly painful occasion he was forced to leave his seat on the bus. He said: 'I got on the bus and wanted to sit next to the driver.
Magic moment: Pope Francis comforts Mr Riva in Saint Peter's Square at the end of his General Audience in Vatican City
Rome meeting: The pontiff kissed Mr Riva, who suffers from neurofibromatosis, which is genetic and not contagious
'But one man said that I couldn't sit there. He said he didn't want to look at me. No one on the bus defended me. I felt terrible.'
The family haven't been on holiday for years - for one thing because the wounds on Mr Riva's body bleed so much that the sheets need changing every day.
'They don't say directly but they say that you have to leave,' Aunt Caterina said.
'People can be OK but the "kids" [Vinicio and Morena] don't go out unless I go along too,' aunt Caterina said: 'They feel more protected when I am there. I've know them since they were born.'
The brother and sister exist on a mere 250 euros a month each from their disabled benefits and 150 euros each from their volunteer jobs.
There is not a lot of money to spare, but their aunt Caterina helps out with her by giving them part of her pension.
Fortunately, in the village the community have become accustomed to him.
He said: 'Those who I have known for a long time are kind; the others are horrible.'
The severely sick man is taken to Lourdes, a popular place of pilgrimage in France, every year by Catholic group Unitalsi but it was the first time they had thought to take him to St Peter's.
WHAT IS NEUROFIBROMATOSIS AND DID THE ELEPHANT MAN HAVE IT?
Neurofibromatosis has long been associated with the 'Elephant Man,' the name given to Joseph Carey Merrick, who was severely disfigured. But evidence now suggests he was suffering from another rare syndrome
The man who met Pope Francis is believed to be suffering from a condition called neurofibromatosis – the name for a number of genetic conditions that cause swellings or lumps.
Although many people who have the condition inherit it from one of their parents, up to 50 per cent develop it randomly from a gene mutation before they are born.
There are two types of neurofibromatosis and this man is suffering from type one, Dr Anand Saggar, a London-based genetics expert, told MailOnline.
Despite their alarming appearance, the growths and swellings - called neurofibromas and caused by a growth of cells - are not cancerous or contagious.
The condition has long been associated with the ‘Elephant Man,’ the name given to Joseph Carey Merrick, who was severely disfigured.
However, in 1986, a new theory emerged that Mr Merrick may actually have had Proteus syndrome, a condition which involves symptoms such as abnormal growth of the bones, skin and head.
The confusion was again compounded in 2001 when it was proposed that he had suffered from a combination of neurofibromatosis type one (NF1) and Proteus syndrome.
However, DNA tests on his hair and bones have proven inconclusive.
Other symptoms of neurofibromatosis type one include flat, light brown spots on the skin.
These harmless marks, also called cafe au lait spots, are common in many people. People who have more than six spots that are bigger than half a centimetre wide should get investigated for NF1.
NF1 is a condition someone is born with, although some symptoms develop gradually over many years. The severity of the condition can vary considerably from person to person.
People with NH1 are more likely to suffer from learning difficulties and behavioural problems, a type of cancer known as malignant peripheral nerve sheath tumours, which affect around 10 per cent of people with NF1 over their lifetime, vision problems, high blood pressure and a curved spine.
ncG1vNJzZmivp6x7pa3IpbCmmZmhe6S7ja6iaKaVrMBwrdGtoJyklWJ%2FdnyYb25xZ3lis6a402afnpmiqXqtscCvoKefXZe8pcWMjZyrqpmXubp5w6Kqn6GXqr%2BmsIymmKdlmJq5pXmvqKeeZaKauarCxKxkpqedmru1ecyorZ6cXay8s7jDZ5%2BtpZw%3D