Hola everybody! Another article came out in Mexico's El Norte newspaper today and I wanted to share it with you all! The article is in Spanish, but I translated it into English below :) Reporter Andrea Menchaca did a great job and I am very grateful to have another opportunity to spread awareness of this devastating disease.
Thanks for checking in!
God bless... or as they say in Mexico, Que Dios te bendiga!
Jessica
"LIVING MEDICAL MIRACLE"
By: Andrea Menchaca
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Jessica Stevens believes in miracles.
Sitting
in her wheelchair, the 25-year old from the U.S, moves, smiles and talks with
enthusiasm, something that she could not do...until three years ago when an
experimental research protocol at the Hospital San José Tec de Monterrey
changed her life.
The
native New Yorker arrived in Monterrey in
2009, as her last option for survival, her only remaining hope. For the past
several years, she had lived in a hospital bed, unable to sit, walk or eat.
She
felt like her body was on fire, like her head was being smashed against a concrete wall, and she
had to use sunglasses and headphones to block out light and sound that caused
her to have seizures. She was very fragile, and only weighed 80 lbs.
"When
I arrived in Mexico I
was totally paralyzed, I had not been able to move my legs in four years, I
could not eat and had been fed intravenously for three years," she tells
El Norte during her most recent visit to the City.
After
having visited hundreds of doctors, and being in a dozen hospitals in the United
States, she had received all
possible treatments without success.
Every
medication had failed to alleviate the intense pain caused by Reflex Sympathetic Dystrophy, a rare,
chronic neurologic disorder, often caused by trauma, characterized by pain of
high intensity.
Jessica's RSD was triggered after a tick bite behind her right knee in 2003, during a
summer camp, that infected her with Lyme Disease.
However,
it wasn't until nearly two years later, when the pain and had spread through
her whole body, that the diagnosis of RSD was made.
As a
result of this disease Jessica suffered intense, sharp, burning pain in her
body, headaches, muscle spasms, gastroparesis (a condition in which the stomach
suffers paralysis), dystonia in the limbs, extreme sensitivity to any touch,
light and the sound, excessive sweating, fever, weakening of bones and skin
ulcers.
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At
this point, doctors said, 'listen, she is very ill, this illness has affected
her entire body, there is nothing else we can do and we believe the best option
would be to turn everything off-- her tubes and medications. We don't expect
her to live another 2-3 weeks in this condition, they told me.' "recalls
her mother, Sarah Stevens, who is now writing a book of her experiences.
"Jessica
was only 19 years old and I said 'no'... We will not stop fighting."
So
when Dr. Anthony Kirkpatrick, a U.S expert on RSD, saw the seriousness of her
condition, he recommended that treatment with a ketamine induced coma could be
Jessica's last hope for survival.
However,
the ketamine coma could not be done in the United
States, as it is not approved
there, it would have to be performed in Mexico by
Dr. Fernando Cantu.
Jessica
did not hesitate to try it, even though she would have to travel to a country
that she had heard negative stereotypes about its health services, Jessica and
her mother now confess.
"Basically,
I would be medically induced into a coma, using massive doses of ketamine, an
anesthetic and hallucinogenic drug, that would shut down my brain for one
week. The hope is that when you wake up your brain re-starts again, much like
when you turn off a computer that is not working and restart it." explains
Jessica.
It is
a very drastic and risky procedure, but Jessica was not afraid.
"I
had nothing to lose, my life was a living hell: I was trapped in my body, in
pain, unable to move or eat. I lost all of my friends, I could not go to
school, all of these things that you think are important. I could not even
watch TV or look at a computer, I could not talk to my sisters, I could not
even wear clothes, why was I living? Honestly, I would have rather died than
continue living like this. "
II.
Rebooting her life
She
arrived in Monterrey in
August 2009 on a stretcher, in a special air ambulance that was paid through
the charitable souls who have always supported the cause: family, friends,
church and even strangers the Stevens family didn't know.
In Monterrey, she
was received by anesthesiologists Fernando Cantú Flores and Luis Alberto Barrientos
Quintanilla, leaders of the research protocol.
Because
of her critical situation, the very next day she was taken down to the
Intensive Care Unit and induced into the ketamine coma, which lasted seven days.
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"I
woke up very sick after the first coma. I had many complications, infections
and terrifying hallucinations. I had amnesia and did not recognize my mother.,
"says Jessica.
For
three months I could not see anything and I was put into a second coma, but not
with ketamine, to try to recover my vision ".
After
almost one year, Jessica finally left the hospital, but was still not
well enough to return home. She and her mom rented an apartment in San Pedro,
and hired nurses to attend her 24 hours a day.
Only
two weeks after her discharge, the City of Monterrey was
hit by Hurricane Alex. Their apartment was flooded and soon Jessica contracted
a rare infection.
It
wasn't long before all of the RSD symptoms began to return: she was once again
paralyzed, having trouble breathing, could not eat and her skin lesions
re-appeared.
"
I began running a high fever- up to 105 degrees, and I was rushed to the
hospital by ambulance. Things soon went from bad to worse. I ended up having
respiratory failure, my heart began to fail, my temperature dropped to only 91
degrees, and I almost died " tells the young woman, who is also writing a
book about her experiences.
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"To
save my life, I was put into a second ketamine coma, which proved to be the
long awaited miracle. When I woke up, I could move my legs for the first time,
I could see, I could breathe, 90 percent of my pain was gone!! It was like
being in a new body, it was amazing. God had healed me."
Now,
Jessica is in remission, she has to be very careful that the disease does not
return, as it did with her dear friend, John Roach, who also underwent this
treatment in 2009. He took his own life recently, like many others suffering
RSD choose to do, as this disease causes one of the most intense pains you can
have, according to the McGill pain scale.
She now
lives in Naples, Florida,
along with her parents, Sarah and David, her sisters Katherine, 22, and
Michelle, 16 years, and her beloved dog Molly. She now enjoys eating food by
mouth and amazingly, after nine years of not being in school, she took an exam to
enter into college, and passed it! Since May she has been studing to become a
Physician's Assistant.
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In
July of last year she met President Barack Obama and shared her story with him,
with the hope that the ketamine coma treatment can be approved in the U.S.
Jessica also gave him binder with scientific articles, letters from doctors
Cantú Flores and Robert Schwartzman, RSD specialist and her story, photos and
progress.
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"In
four years when I finish my studies I want to come to Monterrey and
work with Dr. Cantu as a research assistant. I need to help others who suffer,
no one should go through what I went through all these years. Doctors told me,
'there is nothing more we can do for you, you have three weeks to live', these
are things that you should not ever hear, "she says.
"I
came to Mexico and
I feel like I was reborn here, I have a new life, I am grateful for this
opportunity, but now I want to help other people to have this same chance. "
For
now every six weeks she returns to Monterrey for
small doses of ketamine and rehabilitation to regain strength in her legs, she
was recently able to stand for the first time.
Jessica
gives all of the glory and thanks to God first, then to her mother and then
doctors Cantu and Barrientos, who have become like her adopted father and
adopted brother in Mexico.
She
also loves the mountains of Monterrey.
"When I first saw the Cerro de la Silla, "she recalls," that
mountain became the symbol of the beauty of God, who was here with me, telling
me that I was not alone and that I could do this one more day, because there
were days I could not anymore, but God was with me. "
(End of article)
--Sidebar--
Locals doctors, only in Monterrey, are working successfully on a research protocol to combat Reflex
Sympathetic Dystrophy, a rare disease, which causes pain that is unbearable, in
the aftermath of a trauma.
This
condition is characterized by intense neuropathic pain, "says Dr. Fernando
Cantú Flores, who for five years has led the ketamine coma study. These
patients feel a burning sensation, like a sharp electrical shock through their
bodies, and there are noticeable changes in the affected limbs, such as edema
or significant inflammation, discoloration, temperature, sweating or sweating
little compared to the other end ".
The
anesthesiologist trained at the University of Texas in San
Antonio, where he completed a
specialty in pain medicine. He explains that the RSD cases he has seen have
been caused from the bite of an insect, or more typically, from a minor injury,
like a sprained ankle or a wrist fracture.
"For
these patients, even the slightest touch of clothing, bedding, or air, causes
significant pain. They become hypersensitive to light and sound, so they need
to wear sunglasses or headphones."
Cantu
is also director of the Pain Management Center, located in Zambrano Hellion
Medical Center, adds that as reflex sympathetic dystrophy or complex regional
pain syndrome is a little known condition, the patients he sees arrive in
critical condition and their diagnosis is usually delayed by months or even
years.
Cantu
explains that during the procedure, the patient is induced into a coma using
high doses of an anesthetic drug called ketamine, which is not approved
for treatment for reflex sympathetic dystrophy, but it has worked because it is
a potent antagonist of the nerve receptors responsible for RSD.
Patients
and family members are made aware that this research is a protocol, not a
treatment, clarifies Cantú Flores, and that this is done to improve their
quality of life, because they have tried absolutely every treatment and nothing
has worked.
The
ketamine coma is very risky. My patients are aware that the risk is very high.
In our team there are three intensive care physicians: Rada Felipe Perez,
Fernando Leal Castilleja and Luis Barrientos Quintanilla, and a cardiac
anesthesia specialist Javier Gómez Valero.
Cantú
shares that together, they have treated about 36 patients from England, New
Zealand, Australia, Canada and
mostly from the United States, of
which 65 percent have obtained very good results, but the rest, did not, and
have continued seeking alternatives.
This protocol
originated in Germany, and
they were the only ones doing it until Cantú and his team researched and
consulted with the ethics committee and developed this protocol to allow it in Monterrey.
The
ketamine coma now offers new hope to those who suffer with and survive
with this incurable disease.
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