9/11 Connection?

I have been trying to get someone in the medical profession admit to me that my sarcoidosis COULD be a result of my 9/11 experience. I am a 9/11 survivor, and was dx'd with possible sarcoidosis during a sentinel node biopsy for breast cancer last August. This Monday I will have a lung biopsy and a second lymph node biopsy as a result of a post bc treatment PET scan which shows I have two nodules on my right lung (the bc was in my right breast) and 100 positive lymph nodes throughout my body. Since 9/11 I have gotten diabetes, cataracts in both eyes, a ruptured appendix (this was all in the first 8 months after 9/11), and last year the bc, and my gall bladder needed to be removed. I know at least some of these ailments were the result of 9/11 because most can be triggered by stress. I don't know about the stress factor with sarcoidosis, but I do know about the dust I had to inhale deep into my lungs when the Towers collapsed. Once a year the NYC Health Department contacts 9/11 survivors to get an update on their health since that date. The most recent contact was in October, 2006, and for the first time they asked if I had sarcoidosis! Before last August I had never heard of sarcoidosis, now all of a sudden I "may" have it and NYC is asking me if I do. Too much of a coincidence for me. Also, my sister told me a local news channel did a story a couple of weeks ago, about a sharp increase in sarcoidosis here in NYC and an "unusually high" number of the "new" diagnoses are 9/11 survivors! I need to know the truth.

By anybuddyhere
Posted May 5, 2007 at 11:36 pm
Report post

I have heard that there are lots of survivors that are being diagnosed with Sarcoid. I don't know what the correlation is but I just wanted to say to you that we were all so happy to see you come out of those buildings. We thought it was over for you except for the post traumatic stress that we thought you might have. We never dreamed that you would be spending the rest of your life suffering from one thing or another.
I will remember you in my prayers.
Barb

By survivor911
Posted May 9, 2007 at 10:24 am
Report post

Thank you Barb. Actually, what you've probably heard is that lots of rescue workers have been diangnosed with sarcoid. The 10,000 or so of us who did get out of those buildings, the REAL survivors, have been virtually forgotten in the past 5+ years. I don't speak from any bitterness. I lost 295 co-workers on that day and would gladly suffer with any disease to have them back, but the fact is no one wants to acknowledge the survivor's illnesses because it would cost this city too much money. Well, finally some dignity may be on it's way for me, and God knows how many others who have sarcoidosis post-9/11. On Monday a group called CHEST released a report offically connecting 9/11 to sarcoidosis, so yesterday my doctor gave me a wriiten diagnosis of "9/11 related sarcoidosis" . That's something, at least. Thanks again, for your prayers and good wishes. Stay well!

By hilo323
Posted May 10, 2007 at 7:12 am
Report post

Morning....posted on 5-8-07 on the internet at www.1010wins.com there was a leading article about Sarcoidosis. The article was "Study Links Lung Scarring Disease to Post-Sept. 11 WTC Work." Check it out....many interesting facts. Also Mt. Sinai Hospital in NYC on Saturday August 4th is having a Sarcoidosis Awareness Day and they are going to discuss this topic. Hope this was helpful....Lois

By survivor911
Posted May 10, 2007 at 2:43 pm
Report post

Well, I've finally gotten a written diagnosis from my doctors, "9/11 Related Sarcoidosis". For 5+ years I've waited for someone to put a definitive name to what's been making me feel sick all the time. At least now I know for sure and can start to do something about it, including spreading the word, so others can find out if this could be a problem for them as well. My doctors, who are all affilitated with Mt Sinai Hospital have signed me up for the program there and have contacted the NYC Health Department to have my name registered with them. Hopefully, the City can help with some of the med bills. Thank you all for your posts.

By survivor911
Posted May 11, 2007 at 9:57 am
Report post

Oprah's producers contacted me earlier this year about breast cancer. Someone had written to them about me when they had requested on the website to hear from or about bc patients. They said someone would be in touch "later in the year". I've never heard from them again, but did look up the e-mail address yesterday to write to Oprah about the sarcoidosis. I am having a hernia surgery on Monday, but plan on becoming a VERY outspoken advocate for this disease after that. Thanks!!

By Chief
Posted May 17, 2007 at 1:47 am
Report post

I'm not sure where my contribution fits in here. I have no direct connection to New York or what happened there. My interest is in getting more information about that study. It is interesting to me that someone has made a connection between construction site type dust and my disease. I wonder if the cause or trigger is due to the size of the particles inhaled, or the chemical content? I wonder because I used to install carpet in the stores of a major retailer (cough, Wal Mart, cough) for about three years, and I was exposed to extreme levels of dust during the carpet removal process. From what I have seen of the news accounts of the World Trade Center collapse, the dust levels I encountered weren't nearly as concentrated as in New York. That was a relatively short period of time, and my exposure was over the course of a couple of years. I feel that there may be a similar effect with the cumulative excessive exposure. Although I can't prove it, I am certain that my disease (sarcoidosis of the lungs) is somehow related to the dust or chemical exposure on the carpet job. I was in great physical condition prior to my taking the carpet job. And the longer I did it, the more my health deteriorated. You may notice that Wal Mart is using a wood colored vinyl tile now in place of where the carpeted sections used to be. Coincidence?
You are fortunate to have access to the leading sarcoidosis research facility at Mt.Sinai.

By nygirl
Posted May 24, 2007 at 11:24 pm
Report post

See the news article from WNBC News Channel 4 NY
Hope this helps.

N.Y. Adds Post-Sept. 11 Death From WTC Dust To Victims Tally

POSTED: 8:44 pm EDT May 23, 2007
UPDATED: 10:44 pm EDT May 24, 2007
Email This Story | Print This Story
Sign Up for Breaking News Alerts
NEW YORK -- A woman who died of lung disease five months after Sept. 11 was added on Wednesday to the medical examiner's list of attack victims, marking the first time the city has officially linked a death to the toxic dust caused by the World Trade Center's collapse.

Felicia Dunn-Jones, a 42-year-old attorney who was caught in the dust cloud while fleeing the collapsing towers on Sept. 11, 2001, died of sarcoidosis, a disease that causes inflammation and scarring in the lungs, on Feb. 10, 2002.

Chief Medical Examiner Charles Hirsch, citing "accumulated scientific research" that concluded exposure to trade center dust can cause or contribute to sarcoidosis, said that "Mrs. Dunn-Jones' exposure to World Trade Center dust on 9/11/01 contributed to her death and it has been ruled a homicide."

"Mrs. Dunn-Jones has now been added to the list of people who died as a result of the collapse of the World Trade Center towers," Hirsch wrote.

The city said the Sept. 11 death toll at the trade center is now 2,750. Dunn-Jones will be listed on the Sept. 11 memorial when it opens in 2009, a spokeswoman for the World Trade Center Memorial Foundation said.

A class action lawsuit has claimed dozens of deaths have been caused by exposure to toxic trade center dust. A study published this month by a Fire Department of New York doctor linked sarcoidosis definitively to exposure to the toxic plume that enveloped lower Manhattan after Sept. 11, finding firefighters contracted sarcoidosis at a much higher rate after the Sept. 11 attacks than before.

New York lawmakers seeking federal funding for Sept. 11 health issues said more names should be added to the list.

"Sadly, we have known that Felicia is not alone and that others have died from ailments caused by 9/11," said U.S. Rep. Carolyn Maloney, D-N.Y. "I hope that the medical examiner is no longer in denial about the trade center dust. Dr. Hirsch must review the cases of other 9/11 heroes who, like Felicia, died in the prime of their lives."

A New Jersey medical examiner last year ruled that the January 2006 death of a retired police detective, 34-year-old James Zadroga, was "directly related" to his work at ground zero on and after Sept. 11.

Zadroga's father, Joseph Zadroga, said that his son also suffered from sarcoidosis and that he and many others should be added to the list of victims with Dunn-Jones.

"I think that anybody that passes as a result of 9/11 should be listed on the wall," said Zadroga. "They're going to be adding to that wall for the next 20 years."

James Zadroga was at the trade center site when Seven World Trade Center collapsed but not when the twin towers fell, his father said.

Dunn-Jones breathed in the toxic dust of the towers, did not return to ground zero and became ill shortly after the attacks. She was the only victim who didn't die on Sept. 11 to receive a death benefit from a federal fund to compensate victims' families.

Dunn-Jones' family had asked last year that the medical examiner add her name to the death toll, but Hirsch wrote at the time that his office could not link her death to the exposure "with certainty beyond a reasonable doubt."

And in a letter last week to an attorney representing Dunn-Jones, Hirsch wrote that "I continue to have reasonable doubt" that exposure to trade center dust caused her disease, saying that there was evidence of scarring on Dunn-Jones' heart muscle that appeared to be there before Sept. 11.

But Hirsch said that exposure to the toxic dust cloud certainly would have aggravated her disease and that he would change her listed cause of death.

Dunn-Jones will be listed on the Sept. 11 memorial with the names of 2,973 people killed on Sept. 11 in New York, Pennsylvania and Washington, D.C., foundation spokeswoman Lynn Rasic said.

Mayor Michael Bloomberg, who chairs the memorial foundation, said his "thoughts and prayers are with the Dunn-Jones family."

"It is on their behalf and on behalf of all those affected by 9/11 that we are now building a memorial that remembers and honors the thousands of innocents that died," he said.

© 2007 by The Associated Press. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.

By velezc
Posted May 24, 2007 at 11:33 pm
Report post

Hi NYgirl, I live right across the Hudson River from you. My husband was working near the towers when they went down and I am worried that he could become ill one day. I think that his chances are slimmer because it has been some time and he hasn't shown any symtoms. I would know them since I have Sarcoidosis of the eyes, lungs, bones, joints, skin, heart and the brain. I grew up in Manhattan, in East Harlem. Though I have lived in a suburban setting and I have the wonderful green forest all around me, I still wonder if my initial living experiences have anything to do with my disease.

I feel for the people that were extremely exposed to the dust and their future. Too many people are dying and the doctors are trying to say that these people had Sarc before with the dust making it worse. Unfortunately we will see more and more positive diagnoises of Sarcoid.

Thanks for the article.

I wish you wiell and pain free days.

Cristina

By nygirl
Posted May 27, 2007 at 4:01 pm
Report post

Hi Christina,

I do not know if you read my Blog When Everything Changes.. but one could only wonder what the real affect of 9/11 are and will be for many years to come for us and our children. I was not at the sight but worked right across the river in Astoria/LIC. I was just diagnosed in April and I feel I am getting worse by the day,

I wish you and everyone a happy Memorial Day!!!

Ny Girl

By julzcoop
Posted May 27, 2007 at 5:54 pm
Report post

Hi Suvivor,

I know that me saying this probably won't make you feel much better, but you "REAL" survivors of 9/11 have not been forgotten by me and my family. All of you are always in our prayers. I'm sure that the hassle you get from the city is frustrating, overwhelming, and just plain hurtful. I think that the city is going to have a hard time ignoring all the post 9/11 Sarcoid cases though. Anyway, I just wanted you to know that there are a lot of people here in Upstate NY that haven't forgotten about you survivors.
Take Care,
Julz

By bcamp0554
Posted May 28, 2007 at 10:46 am
Report post

I wonder if I can call myself a suvivor, I worked at 156 wiliams street. As I was coming out of the train station, late to work that day it was total confusion, my main objective was to get to class before I get fired a women came up to me crying and I couldn't wait for someone else to show up so I could get to work on time. I saw the flames from the building, but had enough confidence in NYFD that they could handle it. When I got to class a few of my adult students stated it was a terrorist attack, but still I ignored and then another student got a call from the mom and told her to leave the city right away and the fact that an airplane had flow into the WTC and then we heard an explosion. To make a long story short I told me students lets go, I walk across the BKLYN bridge and feet from getting off the bridge the first tower fell. We stay out of work for away two weeks but when we came back there was still black dust in the air. Each day I came home from work and I blew my nose black dirt would come out and when I took a shower I mean it was like I had a mud fight that dirt would just roll off my body. Now some say only those individuals directly involved have issue but I do believe I was a victum as well

By jeffg9
Posted June 23, 2007 at 10:35 pm
Report post

I was on W 18th that terrible day. 4 blocks north of the official "disaster area." Anyone from 14th st and South qualify for the 9/11 medical studies. Now I know I was North of the Trade Center, and as we saw the Towers fall, I didn't see dust around us. But so many people covered with the Dust trudged uptown. It was amazing looking at the dust on people's shoes, that you could tell who was close to the buildings. My mother-in-law wonders if I got the sarcoidosis from the disaster. I am really unsure, but it does stink that I am 4 blocks away from qualifying for the studies. I guess I will always wonder if I am another victim of 9/11 or not.

By Rlm10
Posted July 27, 2007 at 11:20 pm
Report post

It only makes sense that there are cases surfacing as a result of 9/11 as they were so many toxins in the air those days. I recently read an article, I beleive on Fox news that a lady who has passed away from sarcoidosis was officially declared a victim of 9/11 and added to the death toll. It would interesting to hear from NYC health department statistics. After spending many hours researching sarc , I have come to believe that the onset may be from various triggers,( I believe mine came from watching the planes drop pesticides on the field across from where I lived); but it seems no matter what the trigger the body's immune goes into overdirve and starts overreacting creating the granulomas in varius areas. I really hope that we all push for more awareness for this disease and more funding into research and hopefully someday a cure. There is power in numbers

By pat73
Posted January 1, 2008 at 8:04 pm
Report post

Hi everyone,

Im Pat and im 34......i participated in the 9/11 cleanup for 4 months after the tragedy and for years after experienced fatigue but was told by doctors im not eating right or im depressed etc. Well back in May of 2007 i started waking up in the morning to constant pain in my back , knees, and ankles. I thought it was my mattress so i bought a new mattress but still same result. I was in excellent shape never smoked and currently played on a hockey team. I developed a cough but thought it was a cold then one night during a game could not catch a deep breath..... right away i knew something wasnt right....my doctor sent me to a pulmonoligist for chest xrays and cat scan and found all the lymph nodes in my chest where swollen and compressing my lungs i had granuals on my lungs also....base on my breathing test i lost capacity in my lungs.....i went for a lung biopsy to confirm sarcoid and rule out cancer......i was diagnoised with sarcodosis.....and id bet my life on it that its because of 9/11...i never had an health issue prior to this was a health nut and in very great shape....now i see the fact of the matter is people are starting to develope if they havent already symtoms of sarcoidosis

By Jemmyd
Posted October 30, 2009 at 3:15 pm
Report post

I lived in Brooklyn and worked in lower Manhattan when the 9/11 attacks happened and I suspected I got sarc from the obvious contamination that went on as the buildings burned for months afterward. I did some research on this and found that the first person to die from 9/11 related pollution died less then one year later of sarc her name was added to the list of victims because of this. She lived in Staten Island but worked in lower Manhattan.
here is a link to the story:

http://www.associatedcontent.com/article/263440/woman_who_died_from_lung_di sease_death.html

Welcome to Inspire!

Explore topics in this discussion:

17 replies

Add to the discussion

Help and information from FSR

Group leaders

You