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Wednesday, November 24, 2010

Happy Thanksgiving!

What I am thankful for..... I know I am very thankful for all the love, support and prays from people that have never even met us in the past 2 years. I'm thankful for all of the young adults that have done or will do research papers on this disease in their classes. As well as for all the people helping us spread the word of this disease and helping us teach Dr's by asking their Dr. if they have ever heard of it. I'm thankful for all of the people that stop me or any other member of my family or firends and ask them what Lemierre's is. I'm thankful for my 4 beautiful, healthy & amazing kids. I'm thankful for my family and friends especially for my husband who supports me in everything I do. I am very thankful for the relationship I have with my mother, father, sister and brother as well as the rest of my family. I am soo thankful I got to share 17 great years with my little brother, even though we all wish it were longer and we miss him so much. I'm grateful that he lives on through my children, they remind me so much of him.
I know we have taught hundreds if not thousands of people about this disease and there are still hundreds of thousands more! If anyone reading this is on facebook look us up we are on there as well. Share our link and become our friend. Help us pass the word of this disease. I still read articles from reporters and people saying how rare this disease is. When you look into it and read all of our comments on this page as well as our other site www.lemierresyndrome.com you'll see how untrue that really is. This disease use to be rare. It is making a huge come back in our world.
I am especially thankful to everyone that reads or follows this blog and shares it with everyone they know.
Much Love,
Tammy

3 comments:

Jordan said...

Thanks for the education about this horrible problem. I'm an otolaryngologist in NC and have heard of this complication but it really helps to put a face and name with the disease to remember it well. Sorry to hear about the loss of a great person! You should be commended for your efforts to educate doctors.

Anonymous said...

My nineteen year old daughter is currently serving in the United States Military. We just arrived home to the US two days before Christmas after spending over a month in a military hospital in Korea. During her hospitalization, she was diagnosed with Lemierre's Syndrome. She was intubated and placed on a vent (twice!) and almost lost her life.
Since I wasn't familiar with Lemierre's, I immediately began to do research online. The first thing I came across was Justin's Story. As I read about Justin, it brought tears to my eyes and my heart broke for your family! After realizing the seriousness of Lemierre's, I began to worry even more about my daughters condition. The past month has been a complete nightmare for our entire family. Just like you, I would like to find a way to become an advocate regarding Lemierre's and create as much awareness as possible in hopes of saving others from going through the same situation. I'm not sure exactly sure how to go about it yet, but I know for sure that this is a VERY serious, life threatening illness that needs to be publicized as much as possible! I've had a multitude of media interested in my daughters story, but we're still trying to decide whether or not to publicize it or not due to the fact that she is still active duty and many of the issues we faced had to do with "military care" (or lack thereof) as much as the Lemierre's Syndrome itself. I do not want my daughter to face any reprocussions when she returns to her duty station due to "going public." We have heard about some "negative" reactions by the military from other soldiers who have gone public.
My daughter is not completely healed at this point and I'm still very concerned about what could potentially go wrong, as well as the long term affects of this.
My purpose in bringing her home was to be seen by "civilian" doctors at a reputable hospital with all the specialists she requires to get better. I felt that the flight home was less of a risk than keeping her in the facility she was in!
I'm trying to find information pertaining to where my daughter is NOW (current condition)and precautions to prevent any further medical complications from occurring. Do you know of any info pertaining to "post-Lemierre's Syndrome??" Anything you can provide me with will be very appreciated!
If you would like to talk to me via telephone, I would be happy to provide you with my phone number. What happened to Justin is extremely sad and I would like to join you in creating awareness about Lemierre's. Please let me know if there's anything I can do to help!!

GTatum said...

Day 8 in the ICU for my 18 year old daughter who has Lemierre's Syndrome. We live in Chattanooga, TN. She had all the classic symptons - sore throat which tested negative for strep, pain in her neck, fever, vomiting and then severe pneumonia. We are thankful that one of the doctors in the ICU had treated this once before and recognized the symptoms along with the results of the blood cultures taken the first time she went to the ER. My Caroline seems to grow a little stronger every day, but it's still scary knowing she'll be going home with this clot. I am so saddened to read Justin's story. You honor him well through this website and I know that the publicity will help save others.


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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.