Odetta had what I have…

Pulmonary Fibrosis Contributes to Beloved Civil Rights Writer and Folk
Singer Odetta’s Death

Last update: 9:30 a.m. EST Dec. 4, 2008
SAN JOSE, Calif., Dec 04, 2008 /PRNewswire-USNewswire via COMTEX/ —
Music and civil rights icon Odetta succumbed December 2 as a result of
multiple illnesses. One of them was pulmonary fibrosis (PF), an
illness that relentlessly fills the lungs with scar tissue and
suffocates its victims, and is one of the deadliest yet least well
known diseases in the country. Despite being diagnosed with PF two
years ago, a diagnosis that was essentially a death sentence, Odetta
went on to perform extraordinary concerts all over the world. Her
doctors were amazed at her determination to sing while battling the
disease. Despite her markedly reduced lung capacity, she managed to
complete entire concerts and only access her supplemental oxygen as
she left the stage.
Pulmonary Fibrosis (PF) is a tissue debilitating lung disease that
causes progressive scarring of the lungs, ultimately robbing a person
of the ability to breathe. As many people die each year to PF as to
breast cancer, yet most have never heard of it until they receive the
devastating diagnosis. More than 128,000 suffer from the disease and
incidence and prevalence has increased more than 150 percent in the
last several years.
“We are deeply saddened at the loss of such a beloved singer and civil
rights legend,” said Mishka Michon, chief executive officer for the
Coalition for Pulmonary Fibrosis (CPF). “We lose 40,000 people a year
to this disease (as many as are lost to breast cancer), and each loss
is painful. Odetta’s death highlights for the nation, and for her
fans, what those of us fighting pulmonary fibrosis already know – that
there is a killer disease randomly striking thousands and we have no
treatments. Marlon Brando, Gordon Jump and Robert Goulet’s lives were
among those cut down by pulmonary fibrosis – we don’t want to see
these losses continue at their current pace. We can only hope that,
with increased awareness and funding for research, the future will
change for others.”
Odetta’s manager, Doug Yeager, told the CPF she was diagnosed with PF
two years ago but refused to let the grim prognosis get her down. Most
patients live less than three years and few are able to continue a
normal life because of the extremely life limiting breathlessness and
related exhaustion.
Odetta used supplemental oxygen for the two years she suffered, but
somehow had the strength to perform more than 60 concerts after her
diagnosis around the world – all of her performances except for one
were completed without her having to use an oxygen tank, Yeager said.
“She wouldn’t use her oxygen during her concerts. Somehow, she’d go
out and sing for 90 minutes without it,” Yeager said. The only concert
she performed with supplemental oxygen was one in Denver, Colorado, a
city that sits at 5,280 feet of elevation, he said.
There is no FDA approved treatment for PF, no known cause and no cure.
Odetta is one of 40,000 people who will die this year from the
disease. The CPF has counseled thousands of patients and family
members who’ve faced pulmonary fibrosis. To learn more, please visit:
Odetta’s last concert performance was October 26th of this year,
according to Yeager. She also performed a concert October 6th, in
front of 100,000 people at San Francisco’s Golden Gate Park.
About Pulmonary Fibrosis (PF)
PF is a lung disorder characterized by a progressive scarring – known
as fibrosis – and deterioration of the lungs, which slowly robs its
victims of their ability to breathe. Approximately 128,000 Americans
suffer from IPF, and there is currently no known cause or cure. An
estimated 48,000 new cases are diagnosed each year. IPF is difficult
to diagnose and an estimated two-thirds of patients die within five
years of diagnosis. Sometimes pulmonary fibrosis can be linked to a
particular cause, such as certain environmental exposures,
chemotherapy or radiation therapy, residual infection, or autoimmune
diseases such as scleroderma or rheumatoid arthritis. However, in many
instances, no known cause can be established. When this is the case,
it is called idiopathic pulmonary fibrosis (IPF).
About the CPF
The CPF is a 501(c)(3) nonprofit organization, founded in 2001 to
accelerate research efforts leading to a cure for pulmonary fibrosis
(PF), while educating, supporting, and advocating for the community of
patients, families, and medical professionals fighting this disease.
The CPF funds promising research into new approaches to treat and cure
pulmonary fibrosis; provides patients and families with comprehensive
education materials, resources, and hope; serves as a voice for
national advocacy of PF issues; and works to improve awareness of PF
in the medical community as well as the general public. The CPF’s
nonprofit partners include many of the most respected medical centers
and healthcare organizations in the U.S. With more than 16,000 members
nationwide, the CPF is the largest nonprofit organization in the U.S.
dedicated to advocating for those with pulmonary fibrosis. For more
information please visit www.coalitionforpf.org or call (888) 222-8541.
SOURCE Coalition for Pulmonary Fibrosis



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