Fighting the curse of the face-eating tumour
Pastor Dale Morgan
Fighting the curse of the face-eating tumour*
By Matthew Moore
Last Updated: 3:46am GMT 03/12/2007
A 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 airwaves,
doctors fear his life could be in danger.
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.
Dr Iain Hutchison of the Saving Faces surgery research charity, who
examined Jose in person at St Bartholomew's hospital in London, 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 one of the
city's main squares, 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.
Jose Mestre and his sister Guida
Jose Mestre's siblings do not share his religious beliefs
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.