tagged w/ Lupus
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CNN...
First responders decry exclusion from 9/11 ceremony
By Jeff Stein, CNN
August 16, 2011 1:37 p.m. EDT
STORY HIGHLIGHTS
First responders are not invited to the 10th anniversary memorial ceremony for 9/11
The city says there is only room for 9/11 victims' families
Former workers, many still battling diseases from 9/11, are outraged by the decision
New York (CNN) -- When debris rained from the sky in lower Manhattan on September 11, 2001, the first responders to the terrorist attack did not turn away. They rushed to the World Trade Center buildings while the world around them crumbled.
Yet now, after all the wreckage has been cleared and the rebuilding has begun, their path is again blocked -- not by flying chunks of smoldering rubble, but by space constraints.
The first responders are not invited to this year's September 11 memorial ceremony at ground zero, New York City Mayor Michael Bloomberg's office confirmed Monday.
It's a painful insult for many of the approximately 3,000 men and women who risked their lives, limbs and lungs on that monumental day, puncturing another hole in a still searing wound.
In a statement, Bloomberg spokesman Andrew Brent said the commemoration ceremony is for the victims' families.
"While we are again focused on accommodating victims' family members, given the space constraints, we're working to find ways to recognize and honor first responders, and other groups, at different places and times," Brent said.
But first responder John Feal, founder of an advocacy group for the police officers, firefighters, civilian volunteers and others who worked at ground zero, assailed Brent's response, saying Bloomberg "lives in his own world."
"The best of the best that this country offered 10 years ago are being neglected and denied their rightful place," Feal said.
Denise Villamia, a first responder who worked at ground zero for several months, cried over the phone as she recalled her "totally heartbroken" reaction to the news that she could not attend the memorial service.
"I'm crying because it's really a big betrayal on the part of the city, to rob me from my way to pay homage and to find that comfort and healing," she said. "I feel that I have been robbed of my way to pay tribute."
In addition to the victims' families, several politicians, including two presidents, are expected to be in attendance. Bloomberg's office would not provide specifics on the ceremony's arrangements, but did note that the first responders have not been invited to the preceding nine memorial services, either.
Yet first responder Morris Faitelewicz, vice president of the Auxiliary Police Supervisors Benevolent Association, called that explanation "nonsense." Faitelewicz said that, while there are not usually formal invitations, first responders have been able to attend all of the previous ceremonies simply by showing up.
Not allowing them to attend this year -- the 10th anniversary of the terror attacks -- is an especially galling affront, he said.
Additionally, many of the first responders see the decision, first reported by the New York Daily News, as evidence of the city's attempt to push to the background their untreated ailments in the official narrative of recovery and renewal.
If the responders attend the memorial service, "the promise 'we'll never forget' becomes a blatantly obvious lie -- a public display that the government didn't do right by us," says Bonnie Giebfried, a first responder.
"It'll bring up the issue that we're basically walking dead, and that we're not being treated."
Despite the passage in December of the $4.2 billion Zagroda Act, which provides medical treatment and compensation to responders, many first responders told CNN that the government has failed to address their health needs.
Giebfried has suffered from a failing liver and kidneys, a crushed arm, elbow and wrist; post-traumatic stress disorder, chronic fatigue, encroaching lupus and other diseases. All were caused by the dust, debris and other substances to which she was exposed on 9/11, she said.
On that day, Giebfried, an emergency medical technician at the time, was twice entombed in sheared building fragments, and twice escaped.
She and her partner, Jennifer Beckham, transported people to safety and set up makeshift triage stations. She watched bodies hit the ground and explode "like a bouncing ball," and suffered three asthma attacks through a harrowing day of devastation.
Giebfried said her ongoing medical travails have disabused her of the belief that the United States honors and looks after its service members. Being excluded from the memorial proceedings was yet another confirmation of this, she said.
"If the Founding Fathers ever saw what had happened to us responders, they would roll over in their graves," she said. "Leaving first responders and survivors out of the 10th anniversary is absolutely ludicrous."
Her frustrations were echoed by others.
Father Stephen Petrovich, who drove to ground zero from Huron, Ohio, hours after the terrorists struck, spent weeks at the site removing and blessing the remains of shattered bodies. While there, he says, he inhaled carcinogens that damaged his lungs, and is now in hospice care.
"I don't think they want us there because of all the problems we've had," Petrovich said. "It's like we've been dropped off the face of the earth."
In July, the World Trade Center Health Program, which administers funds from the Zagroda Act, ruled that first responders would not receive compensation for cancer treatment because there is no established causal link between the incidence of cancer and exposure to the site on September 11, citing a dearth of "published scientific and medical findings."
A first responder who also spent months at ground zero, the Rev. Terry Lee called not being invited back for the ceremony "a rip in the heart."
Lee said the country should honor those who responded at its most dire hour of need to encourage others to respond to crises.
"I believe attending will help the healing process ... if we go; we can tell our fellow man to get involved, because, 'hey, America takes care of its own.'"
.CNN...
First responders decry exclusion from 9/11 ceremony
By Jeff Stein, CNN... more
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PART ONE...
Warm, beating hearts offer new hope for transplants
Doctors testing experimental technique that eliminates mad rush to ship organs
Damian Dovarganes / AP
Photo: Registered nurse Younghwa Chang, left, prepares Andrea Ybarra, for a biopsy after her beating heart transplant at Ronald Reagan UCLA Medical Center in Los Angeles. The transplant was part of a procedure where the donor heart is placed into a special box that feeds it blood and keeps it warm and beating outside the body.
By ALICIA CHANG
The Associated Press
updated 12/5/2010 2:52:01 PM ET 2010-12-05T19:52:01
LOS ANGELES — Andrea Ybarra's donated heart was beating rhythmically by the time she awoke from the grogginess of her surgery.
Lub-dub. Lub-dub. Lub-dub. In fact, it was warm and pumping even before doctors transplanted it.
Ybarra belongs to a small group of people who have had a "beating heart" transplant, an experimental operation that's mostly been done in Europe. The donor heart is placed into a special box that feeds it blood and keeps it warm and ticking outside the body.
"I felt peaceful when I woke up. I wasn't scared," recalled the 40-year-old from Los Angeles who suffers from lupus. "It felt like the heart was a part of me all the time."
Despite advances in heart transplantation, the way hearts are moved around the United States and most places remains low-tech.
A team of doctors and organ recovery specialists stuffs an off-the-shelf picnic cooler with ice and jets off at odd hours to a donor hospital where a heart from a brain-dead patient awaits. They inject a chemical to stop the organ and preserve it in the ice chest for the trip home.
Once a heart is harvested, it's a race against time. A heart can stay fresh in the cooler for 4 to 6 hours before it starts to deteriorate. Because of this constraint, doctors can't travel too far to heart-hunt.
It's been done this way for more than four decades, ever since the first U.S. heart transplant was performed on Dec. 6, 1967.
Delays can mean death or disease
Research has shown that the longer it takes to remove a heart and transplant it, the greater the patient's chance of death or heart disease.
But what if a heart could beat on its own after removal from a cadaver?
It may sound a bit macabre, more like an Edgar Allan Poe story. The new high-tech heart box circulates blood from the donor to the heart so that it continues throbbing while in transit from hospital to hospital.
Based on some success overseas, the University of California, Los Angeles is currently heading an experiment along with several other schools that compares the safety and effectiveness of the new preservation method versus the standard cooler.
If the new technology succeeds in preserving hearts longer, it could change the field, experts say.
No longer will patients be limited by location. Doctors could make cross-country heart runs without worrying about how long it takes. Hearts are now given first to people on the waiting list who live near where the donor is hospitalized. If there's no match, then the circle widens until a recipient is found.
"The rush factor will be taken out. I can go all the way to the West Coast to get a heart," said Dr. Bruce Rosengard of Massachusetts General Hospital, who performed the first beating heart transplant in the United Kingdom in 2006.
It may also potentially help ease the organ shortage crisis. Some 3,000 Americans are currently on the heart transplant waiting list. Last year, 359 died waiting for a heart — almost one person a day.
The thinking is that hearts may be in better condition if they're kept beating instead of being cooled in ice. And if hearts can be monitored outside the body, proponents say this may help increase the organ pool by allowing less-than-perfect hearts to be transplanted.
When a heart becomes available
Ybarra's surgery began like any other. The call came in to Ronald Reagan UCLA Medical Center shortly before 4 p.m. on Aug. 24. There is a heart available. Do you have a match?
The transplant team dialed Ybarra. Her lupus, an immune system disease in which the body attacks its own organs, had ravaged her heart, leaving it enlarged and weak. She desperately needed a transplant.
CONTINUED...PART ONE...
Warm, beating hearts offer new hope for transplants
Doctors... more
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Dating Site for Singles with Health Conditions and STDs Announces New Features
Goal of 8,000 Members Worldwide Reached
January 21, 2010 (MMD Newswire) Atlanta, GA - - Prescription4Love.com, the dating and friendship service for people with diseases and health conditions, announces exciting new features to help their members connect and interact. These new features include blogging, instant messaging, multiple pictures, public/private access, virtual gifts and an option of saving favorites.
With 8,000 members worldwide, Prescription4Love.com is fast becoming the Facebook or Match.com for those with afflictions and has filled the void for many lonely people. “We are always working on ways to improve Prescription4Love.com. We want to connect as many suffering people and give them a place to meet others with similar afflictions without the embarrassment and judgment. So far, we have connected over 8,000 people. Our goal has always been to improve lives through love and friendship,” explains Prescription4Love creator, Ricky Durham.
Prescription4Love helps those suffering from: ADD / ADHD, Allergies / Asthma, Amputee, Anxiety Disorders, Arthritis, Autism / Aspergers, Blindness / Eye Disorders, Breathing Disorders / COPD, Burn Survivors, Cancer, Cerebral Palsy, Chronic Fatigue Syndrome, Deafness, Diabetes, Disabled, Dyslexia, Epilepsy, Heart Disease / Stroke, Hepatitis, Herpes, HIV, HPV, IBS / IBD, Infertility / Impotence, Little People, Lupus, Multiple Sclerosis, Obesity, Paraplegic, Parkinson's Disease, Psychiatric Disorders / Bipolar, Quadriplegic, Recovering Alcoholics, Skin Disorders, Speech Disorders, Tourette Syndrome and Transplant Patients.
About Prescription4Love.com:
Ricky Durham’s brother Keith was the inspiration for Prescription4Love. Keith battled Crohn’s Disease (under IBD) and at times weighed between 75-125 lbs. His normal weight was around 150 lbs. It was difficult for him to disclose his disease to anyone, especially the reality of using a colostomy bag. Wanting to help his brother connect with others, especially others with the same illness, Ricky Durham created Prescription4Love. Although Keith passed away July 15, 2004, he was pleased with the work his brother had begun. Now 6 years later, Prescription4Love has helped over 8,000 people find love and friendship.
Prescription4Love and Ricky Durham are featured in Daryn Kagan’s (from CNN) new book “What’s Possible: 50 True Stories of People Who Dared to Dream They Could Make a Difference”.
Contact information:
Ricky Durham
Phone: 770-934-0385
Cell: 205-746-3618
Email: Ricky@Prescription4Love.com
Website: http://www.Prescription4Love.com
# # #Dating Site for Singles with Health Conditions and STDs Announces New Features
Goal... more
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yaquii
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The woman who served as the inspiration for the Beatles' song so many years ago has passed away from Lupus.The woman who served as the inspiration for the Beatles' song so many years ago... more
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Lupus, an autoimmune disease causing pain, inflammation and damage to healthy tissues and organs, sneaks in and out of your life unannounced and uninvited. Flares are unpredictable and interfere in daily activities. Simply diagnosing it can be a long frustrating battle. Eighty percent diagnosed with Lupus are women.
We need change, we need options, we need Lupus specialists to deal with and improve quality of life for Lupus patients. Considering more than 5 million people worldwide have Lupus, it is amazing how little media attention it receives. It is my personal mission to change that.Lupus, an autoimmune disease causing pain, inflammation and damage to healthy tissues... more
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