National Vitiligo Foundation American Vitiligo Research Foundation Inc
What is Vitiligo: [på Svenska]
A skin disease causing the loss of pigmentation in which patients develop
white spots in the skin that vary in size and location. The spots occur
when pigment cells, or melanocytes, are destroyed and the pigment melanin
can no longer be produced.
How many people have vitiligo?
Approximately 1% - 2% of the American population has vitiligo. This percentage
is between 2 - 4 million Americans.
What is the economic impact?
The mainstay of treatment for vitiligo patients, PUVA, can cost close to
$6000 or more per patient. This figure is based on 1 - 1 1/2 years of treatment
or 120 treatments. The cost includes medication, office visits, light therapy,
lab tests and eye exams which are necessary because of the possible damage
to the eyes as a result of the light therapy. This figure does not include
the patient's loss of work time, or travel expense to obtain treatments.
Most insurance companies do not cover the cost of treatment, therefore,
many patients are unable to receive proper care for the disease. As a result
some patients have lost their jobs or are unable to obtain work due to their
cosmetic disfigurement, especially if the work involves interaction with
the general public.
What percentage are women?
Vitiligo affects men and women of all race and age equally.
Lab Bench to Bedside -- Progress in research:
There is no cure for vitiligo but treatment forms have certainly improved
over the years. The treatments are unsatisfactory and many patients tend
to lose the pigment they were successful in gaining through PUVA therapy.
Prevention:
There is no known prevention for vitiligo, otherwise there would be no such
disease. Considerable research is needed in this field to help find a cure
for vitiligo sufferers.
Vitiligo facts
Another example of vitiligo: Black and White
"My skin got changed, but I still remain the same. The slavery of
the beauty and the welfare make us inhuman. Now I'm more free".
Jeffrey Stanton Bell, black or white? He was born black, but vitiligo is
winning the game and now, almost all his body is now white. Jeffrey, 43
years old, was a top model in New York but this illness took him away of
his work, leaving him almost without friends and plunged him in a depression
and anguish. "I had only an obsession: to give some sense to my existence"
he said. He leaves the treatment with ultraviolet rays and he has decided
to assume his change of identity. "The day that I understood the nature
had done its way and that its steps were irreversible, it was when I left
myself to be carried for the river of life". Now he owns a restaurant
in Manhattan and reads clasics books.
Vitiligo has changed black skin of Jeffrey in a big white spot.
The color disappears first in the small folds that skin forms and in the
articulations. Then, the clear spots go extending all over the body. In
only six months, Jeffrey Stanton Bell, black American, turned white from
head to feet. Even his hair lost some color. They detected the illness back
in 1993. He was 33 years old and the diagnosis hit him like a hammer: vitiligo
(that derives from the latin word to appoint the white spots), caused by
a dysfunction of the cells of the pigmentation. It affects to 2% of the
world population.
Vitíligo appears for chance, without any known cause, and its origins
are lost in history of the world. From the pharaohs to the Greeks and the
old Hebrews, despigmentation has been perceived historically as “a
punishment of God”. Jeffrey, the black white one, has seen how his
life changed, how wrecked its identity in the middle of oversight and fear,
before re-borning as “a new man".
His family is native of Barbados, in the West Indie. The sister of his
grandmother also lost her ebony color and she went condemned to isolation. “The time of the superstition has not gone”, says Jeffrey. “Those
ancient fears are still here for illnesses like leprosy, and also for vitíligo,
for some inoffensive spots”.
Not so inoffensive, to be honest. “The pain is not physicist, is
morale and affects the integrity of the human being”. He speaks now
in third person, because now himself has become another one. “I am
dramatically different”. He has been submitted to sessions of phototeraphy
during a year. With ultraviolet rays and pills of melanina, trying to revive
the color that has dull. The black returns to the surface, but only in form
of spots. “Spots of color”, says. “It couldn't go back.
My White body was full of large black spots. It was worse remedy that illness.
All my hopes went broken in pieces”.
Metamorphosis was more difficult to accept because Jeffrey belonged to
the exclusive world of the fashion and beauty. “I was model of Giorgio
Armani in New York. At the begining, maked up the spots, but I couldn't
continue hiding the
illness that advanced so fast. I saw myself forced to renounce my career”.
Yesterday he was a quoted object of the worship to the appearance, and today
counts himself among its victims. “Is certain that the people continues
looking at me. Perhaps more still than before. But no longer is a matter
of the same type of looks. No longer there is desire in them, but nausea
and an insane curiosity”.
Their anonymous eyes are fixed to his body. “In the street, in the
subway, looks of wondering, looks of fear that return against me. I have
become an exception. It seems that people fears to be contaminated. I note
an aggressive fear. They perceive me like a provocation and, at times, they
adopt a defensive attitude. Some friends, with the ones that worked as model,
now ignored me. As much as I told them that it was me, Jeffrey, the same
one, they were set apart of me. ‘¿How are you able to look
at in a mirror?’, they told me. During those years I lived in the
middle of a nightmare”.
“The most painful is to be felt marginalized. Not to have sense of
belonging. I could not identify myself with no known group of individuals.
It made me feel like a remote block, alone”. Those sensations took
him to his childhood. Like in a countdown.
His father is American and Jeffrey grew, with his two sisters, in the white
community of Boston, in Connecticut. “I was not white, but neither
black. At 13, I stayed a long season in Sweden. And there I felt the same
looks of fear, inquired. I felt then the same feeling of difference that
I'm feeling today. I already exercised the same fascination”.
As the original color of his skin goes disappearing, he keeps enclosing
in himself the same. Withdrawn, he hides his injury. During months he has
lived “a time without end”, he says. He was not able to leave
that situation. His father was the one that took the initiative.
“You don't have election. You have to accept yourself”, he
said. “If this it is the worse thing than could happen to you in your
life, you are a lucky person”.
And Jeffrey, little by little, went exploring himself deep inside. “I
only had an obsession: to return to give sense to my existence”. This
way, he learned to accept to that another one to be. As if the second one
guided to the first. He's now ready able to explain this strange freedom
in his jail. "My skin got changed, but I still remain the same. I am
fully the same one. I had to die in some way, to lose me in the white of
my body to be back in myself, to know at last who I was, to experience the
simple fact to be. I renounced to the processing with ultraviolet rays and
to any introspection and obliging. I refused to be the victim of myself
and to contemplate my own disaster”.
Andrea shares Jeffrey's life 16 years ago. She's the one that encourages
him to choose life. “He had to be happy to be able to do happy to
the others”. Andrea endured the descent to the hell, the depressions
and the renunciations. “In spite of my rage, of my bad humor, she
was stood by my side. I do not know if I would be able to surpass this test
without her help. But I will not consecrate our love with a son. We are
not going to have children. I have too much fear for the possibility that
the same thing happens to them. I am 43 years old and I can't be sure that
my children could be as strong as I had to be”.
“During the first 30 years of my life I was surrounded by a material
welfare that keep myself sleeping. Many times I was egotist and was in love
with myself. I was floating in something like a galaxy, seduced by illusions.
Suddenly, I woke up of my dream. The drama I had to live contributed the
sense of the tragic thing and, therefore, of the happiness also. Today I
know that to be well does not means not to be ill. I know, for my own, that
the beauty is not what is not ugly. No longer I confuse happiness with satisfaction.
I have returned stronger and more sensitive before the others and before
its defects. We are slaves of the modern divinities: the beauty and the
welfare. This slavery makes the people get inhuman. Today, I am more free”.
In spite of all, he carries his anguish on. “I have suffered so much
time… The day that I understood the nature had done its way and that
its steps were irreversible, it was when I left myself to be carried for
the river of life. And no longer I have time for the people's murderous
looks”. Although he keeps the consequences of that suffering in his
eyes, which are always wide open.
Jeffrey has recovered his passion for theater and literature, that he studied
for more than 20 years at the University of Yale. And he reads as fast as
he is able the large works of the classics, above all, the writers of the
XIX century. His idol is the poetess Emily Dickinson. “Sometimes I
go through an ecstasy state, and experiment an immense appetite of knowledge”.
Since four years ago earns the life with a restaurant, Bongo, that opened
with his friend Cyntia in the heart of Manhattan. The place is like a bond
with the black and mysterious Africa.
