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Fighting the curse of the face-eating tumour
More articles on this topic: Jehovah's WitnessesA Jehovah’s Witness who for decades refused all surgery on his horrific facial disfigurement has been given hope by a British doctor and new medical technology.
Unwilling to accept a blood transfusion, Jose Mestre has allowed the bloody tumour that first appeared on his lip in adolescence to obliterate almost all of his face.
Now 15 inches long and weighing 12 pounds, it has blinded him in one eye and made eating a daily ordeal. As it begins to block his airways, doctors fear his life could be in danger.
- Four Dangers of the Jehovah’s Witness Organization
But now one of Britain’s leading facial surgeons has proposed treating Jose, 51, by employing ultrasound waves to coagulate the blood before the operation.
This should allow his growths to be removed without risk of heavy bleeding – satisfying his religious prohibition on blood transfusions that has so far hampered his search for treatment.
Jose was examined by two doctors in Britain – Loshan Kangesu, consultant plastic surgeon at Broomfield Hospital, and Dr Iain Hutchison of St Bartholomew’s in London.
Dr Hutchison, who also runs the Saving Faces surgery research charity, is optimistic that a single operation with a harmonic scalpel could have a dramatic affect on Jose’s features.
“I think we can remove a large proportion of the lesions – around 80 per cent,” he said. “We would then have to deal with the underlying nose, lip and tongue disfigurement.”
“I have never seen a vascular malformity as bad,” he added.
Jose’s condition, haemangioma, stems from abnormalities in the capillaries and veins in his face. In effect, what should be a river carrying blood back to his heart has turned into a lake, which has now expanded to obliterate the rest of his features.
For Jose, surgery would offer an escape from the routine he has developed to help deal with his affliction.
Every day he sets off from his home in a suburb of Lisbon for Rossio Square, one of the city’s main plazas, where he sits out the afternoon enduring the stares and questions of strangers. He has become something of a local celebrity, a notoriety he does not always seem to resent.
Unable to find work or a girlfriend, he has been supported by his siblings since the death of his mother, with whom he was very close and from whom he took his religious beliefs.
“It’s very difficult to find out the truth about why he hasn’t been treated in the past,” said Rob Farquhar, producer of the Discovery Channel documentary which brought Jose to Britain in search of a cure.
Financial pressures, mis-diagnoses and the limitations of the Portuguese health system all played a role, but Jose’s own complicated attitude to his condition has not helped.
Unsuccessful and unhappy visits to Germany and Spain in search of medical care in his youth have left him with a distrust of doctors. This, combined with his loyalty to his mother’s faith, and concerns about life without the mask to which he has become accustomed, appear to have instilled Jose with a sullen fatalism about his condition.
His inertia has infuriated his close family, who do not share Jose’s religious beliefs. Jose himself, although a Jehovah’s Witness, does not attend any church.
During the consultation with Dr Hutchison in London, Jose’s sister Guida reacted with exasperation her brother’s initial reluctance to discuss the offer of a transfusion-free operation.
“Die alone, not with me. For me, finished,” she cried, in dramatic footage to be broadcast for the first time this week. Guida shoulders much of the burden for caring for Jose.
But Jose now seems ready to confront his condition. He has agreed in principle to Dr Hutchison’s proposal to return to London for an exploratory operation on one of his smaller lesions.
If the treatment works, the majority of Jose’s tumour could be removed and his face rebuilt in a single 12 hour operation.
Despite the experimental nature of the treatment Dr Hutchison is confident of success.
A harmonic scalpel has never been used to remove growths as extreme as Jose’s, but has proved itself a highly effective surgical tool since coming onto the market a few years ago.
Dr Hutchison, who has offered to carry out the operation without charge, is now waiting for Jose and his family to get in contact and arrange an appointment.
“I hope that he is well and in reasonable health, and if he wants to come and see me my door is open,” he said.
• “The Man with No Face“, part of the “My Shocking Story” series, will be shown on the Discovery Channel at 9pm on Dec 6. For more details visit the programme’s website.
• Saving Faces is the only charity in the United Kingdom solely dedicated to the worldwide reduction of facial injuries and diseases. It funds education and research to improve the physical and psychological treatment of all victims of oral cancer and other facial diseases.
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