As I said yesterday I sent an email to the CDC (Centers for Disease Control) and I received a reply back today from them here is what they said,
"Thank you for your submission CDC-INFO. Your comments on Lemierre's Syndrome have been forwarded to the CDC’s Division of Foodborne, Bacterial and Mycotic Diseases for their information. They will contact you directly if they have any additional questions."
So hopefully we will hear from them again soon. Here is the email I sent to them yesterday,
" It was brought to my attention the # of cases is rising dramatically for Lemierre's Syndrome. Anyhow, my 17 year old brother just passed away 3 months ago from that same disease. 2 months prior there was a 14 year old girl that passed away at the same hospital where my brother was. In the last 2 months I have received a total of 23 stories emailed to me of Lemierre's syndrome. It is the most horrifying disease I have ever seen. It literally attacks and kills the organs in the body. In my brother’s case it attacked his Lungs, Kidneys and they also found signs of it in his brain. Dr. Robert Centor, rcentor@gmail.com. He also has a website www.medrants.com. He has been studying Lemierre’s and sore throats for a long time now. He may be able to help in some way. I have been working really hard to get the word out about Lemierre’s. I asked a dozen Dr’s here in St. Louis and only a few had every heard of it. We are also getting ready to do a news interview to bring more awareness here in St. Louis. I conducted a study on my website and 95% of people that had visited my site and NEVER heard of it. Everyone says it’s a rare disease but you would not believe all the stories that have been emailed to me just in the past 3 months. All the stories I have received took place in the last 3 years. I do believe it is still rare but I also believe it is making a come back and we have to figure out how to stop it or recognize it faster. My brother fought it for 1 month and he lost his battle May 12, 2008 the day after Mother’s day and my 1 year wedding anniversary. I will not give up until someone will conduct another research on this disease and find out why it is coming back and why some people live and some don’t. The last research that was done on this disease was in the 1980’s in Denmark and they said there have only been 120 cases in 100 years. Which is NO LONGER TRUE; I am now studying and figuring out the ins and outs of starting up a foundation or charity to help fund research for this disease. Please do not hesitate to contact me if you like. Thank you for your time, Tammy Valencia"
Hopefully I have caught some one's attention!!!!! Time will only tell!!!
Luv,
Tammy
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Thursday, July 31, 2008
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Justin's news article in the West Magazine
This was taken from http://www.westnewsmagazine.com/news02.html
Rockwood student dies rapidly from little-known disease
By Diane Plattner
In April, Eureka High School student Justin Rodgers began to complain of a severe sore throat and was dead approximately one month later from an unfamiliar disease. Now, his mother hopes to spread awareness about the deadly disease.
Justin died in the early morning hours of May 12, the day after Mother’s Day, after losing a battle with Lemierre’s Syndrome, a serious bacteria that is not well-known and even doctors are prone to misdiagnose the disease. Unfortunately, Rodgers’ doctor was among that group after initially diagnosing him with strep throat on April 11, said Sheryl Rodgers, Justin’s mother.
“Justin had said, ‘Mom, this is the worst sore throat I’ve ever had in my life,’” Rodgers said.
She said that Justin’s doctor took no throat culture and gave her son medicine for strep throat. She said her son’s condition worsened over the next few days during which he had increased high fever, chest pain and a lump in his neck. On April 14, Rodgers took her son to St. Anthony’s Hospital, which transported him overnight to Cardinal Glennon Children’s Hospital where he underwent extensive testing, including X-rays and blood work, Rodgers said.
Rodgers said that hospital officials diagnosed him with Lemierre’s Syndrome, a bacteria that can surface after mouth trauma. Last July, Justin was in a car accident that resulted in mouth injuries that required him to get major dental work, including a recent new tooth. In addition, Justin had suffered a broken nose just before the onset of his sore throat, his mother said.
“I wonder if all this woke up the bacteria, which was already living in the body,” Rodgers said.
The last time Rodgers saw him fully awake was a few days later, when hospital officials decided to place her son on a respirator and sedate him with drugs.
“He was out of it but still with us then,” Rodgers said. “He would frown when the doctors worked on him. So he had some responses.”
However, Justin’s lungs kept collapsing, prompting hospital doctors by April 25 to place him on an ECMO machine to help rest his lungs and heart. Doctors at that point also put him into an induced coma, Rodgers said.
“At that point there was no response from Justin,” Rodgers said. “Still, I talked to him and rubbed his sore spots to let him know we were there.”
By Mother’s Day, Justin was leaking too much blood, prompting doctors to decide to remove him from the ECMO, a move they said was risky if his lungs were not healed enough.
“Once they took him off the ECMO, Justin’s face was getting gray,” Rodgers said. “He was holding his own for a few hours, but then he starting going downhill.”
Justin died early the next morning following Mother’s Day with his immediate family, including three older siblings, by his side, Rodgers said.
“He was our baby,” Rodgers said. “I think the hospital tried to keep him going so he did not die on Mother’s Day.”
The tragedy is not the first for the Rodgers family. They also lost a 4-year-old child in a horseback riding accident and had a stillborn child many years ago, Rodgers said.
“I thought God could not possibly do this to us again,” Rodgers said. “I asked why again, why us. But there is no answer. Here we are walking on egg shells again.”
Rodgers said she was at least thankful that Justin’s funeral was so big that people were standing outside, a huge tribute to his life. She also hopes to honor his life with a campaign to help spread awareness about Lemierre’s Syndrome, which she said often hits people between the ages of 14 and 25. It is not spread by kissing but instead lives in the body, she said. Her goal is to make people, including doctors, more aware of its symptoms so they are not mistaken for strep throat.
“I do not want Justin to have died in vain,” Rodgers said. “This is one bad bacteria. It is very serious. People should not treat it lightly.”
To learn more about Lemierre’s Syndrome, visit the Rodgers’ family Web site at lemierresyndromejrodgers.blogspot.com.
Rockwood student dies rapidly from little-known disease
By Diane Plattner
In April, Eureka High School student Justin Rodgers began to complain of a severe sore throat and was dead approximately one month later from an unfamiliar disease. Now, his mother hopes to spread awareness about the deadly disease.
Justin died in the early morning hours of May 12, the day after Mother’s Day, after losing a battle with Lemierre’s Syndrome, a serious bacteria that is not well-known and even doctors are prone to misdiagnose the disease. Unfortunately, Rodgers’ doctor was among that group after initially diagnosing him with strep throat on April 11, said Sheryl Rodgers, Justin’s mother.
“Justin had said, ‘Mom, this is the worst sore throat I’ve ever had in my life,’” Rodgers said.
She said that Justin’s doctor took no throat culture and gave her son medicine for strep throat. She said her son’s condition worsened over the next few days during which he had increased high fever, chest pain and a lump in his neck. On April 14, Rodgers took her son to St. Anthony’s Hospital, which transported him overnight to Cardinal Glennon Children’s Hospital where he underwent extensive testing, including X-rays and blood work, Rodgers said.
Rodgers said that hospital officials diagnosed him with Lemierre’s Syndrome, a bacteria that can surface after mouth trauma. Last July, Justin was in a car accident that resulted in mouth injuries that required him to get major dental work, including a recent new tooth. In addition, Justin had suffered a broken nose just before the onset of his sore throat, his mother said.
“I wonder if all this woke up the bacteria, which was already living in the body,” Rodgers said.
The last time Rodgers saw him fully awake was a few days later, when hospital officials decided to place her son on a respirator and sedate him with drugs.
“He was out of it but still with us then,” Rodgers said. “He would frown when the doctors worked on him. So he had some responses.”
However, Justin’s lungs kept collapsing, prompting hospital doctors by April 25 to place him on an ECMO machine to help rest his lungs and heart. Doctors at that point also put him into an induced coma, Rodgers said.
“At that point there was no response from Justin,” Rodgers said. “Still, I talked to him and rubbed his sore spots to let him know we were there.”
By Mother’s Day, Justin was leaking too much blood, prompting doctors to decide to remove him from the ECMO, a move they said was risky if his lungs were not healed enough.
“Once they took him off the ECMO, Justin’s face was getting gray,” Rodgers said. “He was holding his own for a few hours, but then he starting going downhill.”
Justin died early the next morning following Mother’s Day with his immediate family, including three older siblings, by his side, Rodgers said.
“He was our baby,” Rodgers said. “I think the hospital tried to keep him going so he did not die on Mother’s Day.”
The tragedy is not the first for the Rodgers family. They also lost a 4-year-old child in a horseback riding accident and had a stillborn child many years ago, Rodgers said.
“I thought God could not possibly do this to us again,” Rodgers said. “I asked why again, why us. But there is no answer. Here we are walking on egg shells again.”
Rodgers said she was at least thankful that Justin’s funeral was so big that people were standing outside, a huge tribute to his life. She also hopes to honor his life with a campaign to help spread awareness about Lemierre’s Syndrome, which she said often hits people between the ages of 14 and 25. It is not spread by kissing but instead lives in the body, she said. Her goal is to make people, including doctors, more aware of its symptoms so they are not mistaken for strep throat.
“I do not want Justin to have died in vain,” Rodgers said. “This is one bad bacteria. It is very serious. People should not treat it lightly.”
To learn more about Lemierre’s Syndrome, visit the Rodgers’ family Web site at lemierresyndromejrodgers.blogspot.com.
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3 comments:
God bless you for bringing this horrible disease out to the public. My daughter, Leah, (who posted here) survived Lemierre's in the spring of 2004. Just a sore throat and within 5 days on a vent. She was in Bassett Hospital in Cooperstown, NY and at that point they had three cases previously and one person did died. You are so brave for the work you are going, my deepest sympathy. JOY
good job tammy....i have been wondering the same thing how others can survive and how other people dont...and why is it rare? so keep up the good work!!! love yah
Tammy,
You continue to amaze me with your resoursfulness and dedication. Thank you for all of you hard work. Please let me know if there is anything I can do to help out here in Massachusetts. My email is spirittamer2001@yahoo.com
>big hugs<
*Amie
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