I have received at least 7 or 8 emails in the past 3 weeks of cases that are all around the US right now. I know that doesn't seem like a lot to some people reading this but that is only 7 or 8 cases of people who found our organization on the Internet! I know there are so many more out there. I receive google alerts for the word "Lemierre's", every time someone posts something about Lemierre's on the Internet. I get a email sent to me of the item that has the word Lemierre's in it. I usually only receive an email every few weeks however in the past week I have received an email everyday and there are 4 to 5 links of articles and other items discussing Lemierre's. 2 of the links I received where from family members stating how their loved one had passed away due to Lemierre's this happening in just the past few weeks. On one of the websites the person posting actually put our web address www.lemierresyndrome.com on the page so everyone could learn more about it!!! I have also received 2 emails from people saying their loved one had passed away in the past 3 to 4 months from this disease. That is 4 people that I have learned about in the past few weeks that have passed away! OUr thoughts and prayers are with all of those families! We know your pain and suffering all to well!
We sent out our first batch of letters to health care places starting with Urgent Cares in Sept. One of the ladies that emailed me had taken her loved one there and they passed away shortly after. It's really sad. The public is listening to us but the Health care people are not just there yet. But we won't give up! I plan on working on the next mailing to send out after the holidays.
To everyone that has contacted me Thank You again!!!
I may not be able to get back to everyone right away but we do appreciate your thoughts, prayers and sharing your stories with us!
Love,
Tammy
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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:
My nephew was just (finally) diagnosed w/ Lumierre's yesterday. He is in Children's Hospital in Denver fighting it right now. He's been sick for almost 2 wks. The pneumonia is pretty bad and they are trying to treat it with several intravenous antibiotics now. His name is Michael.
I've been to your site often as I, too, have lost a child, my son Mason, to Lemierres. Mason's story is on www.whenyouloseachild.wordpress.com if you'd like to read about it. I'm commenting on this particular days posting because December 7, 2009 was the day Mason died after spending 3 weeks in the hospital. My sympathy and love to you and all other parents and siblings who have suffered through losing a child to this devastating illness. With love, Susan Jackson
I live in the UK and my friends 5 year old boy has just been diganosed with LS if his daddy hadnt taken him to the doctors they would have lost him. it started as an ear infection and he has just had an op. he will miss xmas but at least hes being treated.
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