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Thursday, May 29, 2008

More emails

I just sent out 29 more emails to talk radio shows around St. Louis and other cities. Here is the email I sent:
Today I’m emailing you to bring awareness to a very serious illness. This disease is a fast acting killer. It attacks the body faster then any Cancer, HIV or anything I have ever heard of. My 17 yr old brother past away 2 weeks ago from it. The say it’s rare but it is making its way back into our world and needs to be stopped. Doctors do not know much about it at all. Actually I would guess 70% of Dr’s have never even heard of it! I asked 3 last week and they all said “What’s that?” 2 teenagers died in St. Louis with in 2 months of each other from it. The name of this disease is “Lemierre’s Syndrome” also known as the forgotten disease. Everyone that survives it calls it their “Near Death Experience”. It is also known as strep throat gone bad. I’ve emailed every news channel, radio station, news paper I possibly can to get awareness out about this horrible killing disease that no one wants to talk about or research. Please check out my brother’s website and if you can somehow add it to your station’s website to promote awareness that would be amazing. Or even mentioning it once on your show could make a huge difference. That one special Dr may hear it and want to start researching it more.
www.lemierresyndromejrodgers.blogspot.com
What if your son or daughter was diagnosed with Strep or tonsillitis and a couple weeks later was on a ventilator or life support struggling to live. Most of the cases I have read about it took the Dr’s at least 2 or 3 weeks to figure out what the people had. That is ridiculous! WE need to learn more about this disease and research it to stop it from hurting our children. It mostly affects young healthy adults, ages 14 to 19.
Thank you for your time!!!

Tammy Valencia
Sunflwz2@yahoo.com

If you would like to copy it and email everyone you know, radio stations, Tv stations talk shows anyone that would be great too!

4 comments:

Anonymous said...

Dear Tammy,
Thank you for fighting to bring Lemierre's Syndrome into the news and medical prominence and honoring your special brother at the same time.

It's a difficult thing to do! I know because I've been trying to do it for nearly three years myself. My then 19-year-old daughter had Lemierre's in September 2005 and in a 5-day period she had to undergo two emergency brain surgeries.

Don't give up and keep pestering! You've got an important message and I agree with how and what you are saying. Yes, it is a rare disease but not nearly as rare as we are led to believe. You cited the twin tragedies of two young people contracting it and dying from it within two months in St. Louis. At the University where my daughter attends in Duluth, MN, two freshman women got it in a two-year period. A third young woman from the same town had gotten it two years before my daughter. Three cases in the same geographical vicinity within 5 years. That probably means it isn’t a 1 in a million disease but perhaps more like 1 in 70,000 for the affected 16-24 age group as the latest Danish study reported. When you track the number of recent cases in the United States, it begs for the need for a medical study and further research about Lemierre’s in this country.

Sometimes the battle to be heard when telling the Lemierre’s message seems lonely. But believe me, the stories of Lemierre’s victims are uncannily similar and the disease takes many of them to the brink of death. This isn’t a story that should be ignored.

I am so sorry that your brother died from Lemierre’s Syndrome. Your love for your brother is fueling a powerful message and you are not only honoring the memories of your dear loved one—you are likely to save future lives.

With Sympathetic Understanding
and Admiration for You!
A Lemierre’s Mother
Kristie

Leah said...

I had Lemierre's Syndrome in March of 2004. It was a near death experience for me, and I am so sorry to hear about your loss.

If you would like to read about my experience, or some others, please see:

http://groups.yahoo.com/group/lemierres_syndrome/message/219


Best to you,

Leah Korce

j.carroll said...

Have you thought about contacting St. Louis University? As you know, it's a big medical university and they are always conducting research projects like that! You never know what kind of response you will get from them. In fact, I would check online to get contact information for every major medical university in the country! Just a thought :-) BTW... Way to go on getting the word out! You're doing a great thing here and I can see that you have already reached many, many people.

Anonymous said...

Thanks for informing me~ Again, I am so sorry for your loss! God bless you and your family!


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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.