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!
Thursday, May 29, 2008
Tuesday, May 27, 2008
No replies yet
Well I emailed every news channel here in St. Louis and even a couple talk shows. However I have had no replies yet. I'm sure these things take time. I also emailed around 5 people from the Post Dispatch. My mom had a good idea of creating just a generic letter about Lemierre's Syndrome and mailing it to all the Dr's we can. I created 250 business cards with information on Lemierre's Syndrome along with this website just to hand out to everyone we know. We let off 17 balloons Sat in honor of Justin. I attached notes to the Balloons saying:
These balloons are set off
in memory of Justin Rodgers.
Check out his website & pass it along
www.lemierresyndromejrodgers.blogspot.com
Knowledge is power!!!
We love you little brother!
We won't give up until someone will listen to us!
These balloons are set off
in memory of Justin Rodgers.
Check out his website & pass it along
www.lemierresyndromejrodgers.blogspot.com
Knowledge is power!!!
We love you little brother!
We won't give up until someone will listen to us!
Thursday, May 22, 2008
Another Case
Today I am going to try to email as many newspaper and TV channels as I can. My mom gave an interview yesterday to a local newspaper that is interested in Justin's case.
Yesterday my mom also spoke to the family whose daughter passed away from this same disease in March. She was also at Cardinal Glennon. Her family is trying to get the word out about this illness as well.
Yesterday I found a blog about Lemierre Syndrome and 4 people left comments saying their Dr told them they had Strep Throat and gave them antibiotics with out even giving them a strep test. That is exactly what Justin's Dr did to him. I feel like some Doctors (NOT ALL!!) are just either getting too lazy to do tests or are just too busy and over booking themselves to do the tests. Or maybe its the insurance companies telling them not to. That is just my point of view or my thoughts on this situation. I hope it is not the truth.
I went to the Dr when Justin was in the hospital b/c I started getting a really bad cold. When I was telling the Dr of my symptoms I mentioned my brother being in the hospital with Lemierre Syndrome. She looked at me puzzled and said "Whats that?" 3 days later I took my daughter in for her 2 month check up and after her visit I asked the Dr (Who has been my family's pediatrician for about 20 years.) if he had ever heard of Lemierre Syndrome. He said No and went and got his medical book to look it up. The book he grabbed was at least 6 inches thick and when he found lemierre syndrome in it he looked at me and said, "Just to show you how rare and un researched this disease is look what they wrote." It was maybe 2 paragraphs long and that was it. Pretty much all the paragraphs said is sore throat and mono like symptoms, something about blood clots & can be serious. That's when I knew we were dealing with a nasty illness.
I know websites say this is a RARE disease but tell me how rare it really is when within 2 months of each other 2 children passed away from this thing not even 30 miles from each other and there is a yahoo support group for those who have survived it.
When Justin first was diagnosed w/this I did a lot of research and everyone I found that survived called this their "Near Death Experience!" I guess the people we should really be bringing awareness to are Doctors and Nurses.
Yesterday my mom also spoke to the family whose daughter passed away from this same disease in March. She was also at Cardinal Glennon. Her family is trying to get the word out about this illness as well.
Yesterday I found a blog about Lemierre Syndrome and 4 people left comments saying their Dr told them they had Strep Throat and gave them antibiotics with out even giving them a strep test. That is exactly what Justin's Dr did to him. I feel like some Doctors (NOT ALL!!) are just either getting too lazy to do tests or are just too busy and over booking themselves to do the tests. Or maybe its the insurance companies telling them not to. That is just my point of view or my thoughts on this situation. I hope it is not the truth.
I went to the Dr when Justin was in the hospital b/c I started getting a really bad cold. When I was telling the Dr of my symptoms I mentioned my brother being in the hospital with Lemierre Syndrome. She looked at me puzzled and said "Whats that?" 3 days later I took my daughter in for her 2 month check up and after her visit I asked the Dr (Who has been my family's pediatrician for about 20 years.) if he had ever heard of Lemierre Syndrome. He said No and went and got his medical book to look it up. The book he grabbed was at least 6 inches thick and when he found lemierre syndrome in it he looked at me and said, "Just to show you how rare and un researched this disease is look what they wrote." It was maybe 2 paragraphs long and that was it. Pretty much all the paragraphs said is sore throat and mono like symptoms, something about blood clots & can be serious. That's when I knew we were dealing with a nasty illness.
I know websites say this is a RARE disease but tell me how rare it really is when within 2 months of each other 2 children passed away from this thing not even 30 miles from each other and there is a yahoo support group for those who have survived it.
When Justin first was diagnosed w/this I did a lot of research and everyone I found that survived called this their "Near Death Experience!" I guess the people we should really be bringing awareness to are Doctors and Nurses.
Tuesday, May 20, 2008
Its working keep it up!!!
This site hasn't even been up and going for 24 hours yet and we already have so many people saying how great it is!! Thank you to everyone who is passing on the word!
Like I said this is our first blog/website so please be patient with us! I've had some people say why the long web address? I didn't just want to put LSjrodgers because no one knows what LS is I wanted to spell it out that way if it catches someones eye they will say "Lemierre's Syndrome what's that?" and maybe Google it.
My children's physician had never even heard of it and he was Justin, Jamie, Chrissy and my physician too. He pulled out the book to read about it and in this HUGE medical book there was only 1 small paragraph about it. That's ridiculous! This disease is hurting our children and there is one paragraph about it! I promise that will change!
Thank you!!
Like I said this is our first blog/website so please be patient with us! I've had some people say why the long web address? I didn't just want to put LSjrodgers because no one knows what LS is I wanted to spell it out that way if it catches someones eye they will say "Lemierre's Syndrome what's that?" and maybe Google it.
My children's physician had never even heard of it and he was Justin, Jamie, Chrissy and my physician too. He pulled out the book to read about it and in this HUGE medical book there was only 1 small paragraph about it. That's ridiculous! This disease is hurting our children and there is one paragraph about it! I promise that will change!
Thank you!!
Monday, May 19, 2008
Awareness
Well the first post to this site is going to just be about Lemierre's Syndrome and the definition.
Lemierre's syndrome (or Lemierre's disease) is a disease usually caused by the bacterium Fusobacterium necrophorum, and occasionally by other members of the genus Fusobacterium (F. nucleatum, F. mortiferum and F. varium etc.) and usually affects young, healthy adults. Lemierre syndrome develops most often after a strep sore throat has created a peritonsillar abscess, a crater filled with pus and bacteria near the tonsils. Deep in the abscess, anaerobic bacteria (microbes that do not require oxygen) like Fusobacterium necrophorum can flourish. The bacteria penetrate from the abscess into the neighboring jugular vein in the neck and there they cause an infected clot (thrombosis) to form, from which bacteria are seeded throughout the body by the bloodstream (bacteremia). Pieces of the infected clot break off and travel to the lungs as emboli blocking branches of the pulmonary artery bringing the heart's blood to the lungs. This causes shortness of breath, chest pain and severe pneumonia. Fusobacteria are normal inhabitants of the oropharyngeal flora. This is a very rare disease with only approximately 160 cases in the last 100 years.
Symptoms
The first symptoms are a sore throat, extreme lethargy, fever, and general body weakness, but after a week or two these symptoms are followed by a spiked fever, rigors, swollen cervical lymph nodes and septicemia (infection of the blood) which can cause complications in other parts of the body including abscesses of lung, brain, and other organs, kidney failure and also effects on liver and joints if untreated.
Treatment
Lemierre's syndrome is easily treated with antibiotics, but because sore throats are most commonly caused by viruses, for which antibiotic treatment is unnecessary, such treatment is not usual in the first phase of the disease. Lemierre's disease proves that, rarely, antibiotics are sometimes needed for 'sore throats'. If a persistent sore throat, with the symptoms are found, physicians are cautioned to screen for Lemierre's syndrome. Fusobacterium necrophorum is generally highly susceptible to Beta-lactam antibiotics, metronidazole, clindamycin and third generation cephalosporins while the other fusobacteria have varying degrees of resistance to beta-lactams and clindamycin. The disease can often be un-treatable, especially if other negative factors occur,i.e. various diseases occurring at the same time, such as; meningitis, pneumonia etc.
Incidence
Lemierre's syndrome is currently a very rare disease, but was quite common in the early 20th century before the discovery of penicillin. The reduced use of routine antibiotics for sore throats by doctors may have increased the risk of this disease, with 19 cases in 1997 and 34 cases in 1999 reported in the UK. The incidence rate is currently 0.8 cases per million in the general population, leading it to be termed the "forgotten disease". The mortality rate was 90% prior to antibiotic therapy, but is now generally quoted as 15% with proper medical treatment, although one series of cases reported mortality as low as 6.4%.[
Lemierre's syndrome (or Lemierre's disease) is a disease usually caused by the bacterium Fusobacterium necrophorum, and occasionally by other members of the genus Fusobacterium (F. nucleatum, F. mortiferum and F. varium etc.) and usually affects young, healthy adults. Lemierre syndrome develops most often after a strep sore throat has created a peritonsillar abscess, a crater filled with pus and bacteria near the tonsils. Deep in the abscess, anaerobic bacteria (microbes that do not require oxygen) like Fusobacterium necrophorum can flourish. The bacteria penetrate from the abscess into the neighboring jugular vein in the neck and there they cause an infected clot (thrombosis) to form, from which bacteria are seeded throughout the body by the bloodstream (bacteremia). Pieces of the infected clot break off and travel to the lungs as emboli blocking branches of the pulmonary artery bringing the heart's blood to the lungs. This causes shortness of breath, chest pain and severe pneumonia. Fusobacteria are normal inhabitants of the oropharyngeal flora. This is a very rare disease with only approximately 160 cases in the last 100 years.
Symptoms
The first symptoms are a sore throat, extreme lethargy, fever, and general body weakness, but after a week or two these symptoms are followed by a spiked fever, rigors, swollen cervical lymph nodes and septicemia (infection of the blood) which can cause complications in other parts of the body including abscesses of lung, brain, and other organs, kidney failure and also effects on liver and joints if untreated.
Treatment
Lemierre's syndrome is easily treated with antibiotics, but because sore throats are most commonly caused by viruses, for which antibiotic treatment is unnecessary, such treatment is not usual in the first phase of the disease. Lemierre's disease proves that, rarely, antibiotics are sometimes needed for 'sore throats'. If a persistent sore throat, with the symptoms are found, physicians are cautioned to screen for Lemierre's syndrome. Fusobacterium necrophorum is generally highly susceptible to Beta-lactam antibiotics, metronidazole, clindamycin and third generation cephalosporins while the other fusobacteria have varying degrees of resistance to beta-lactams and clindamycin. The disease can often be un-treatable, especially if other negative factors occur,i.e. various diseases occurring at the same time, such as; meningitis, pneumonia etc.
Incidence
Lemierre's syndrome is currently a very rare disease, but was quite common in the early 20th century before the discovery of penicillin. The reduced use of routine antibiotics for sore throats by doctors may have increased the risk of this disease, with 19 cases in 1997 and 34 cases in 1999 reported in the UK. The incidence rate is currently 0.8 cases per million in the general population, leading it to be termed the "forgotten disease". The mortality rate was 90% prior to antibiotic therapy, but is now generally quoted as 15% with proper medical treatment, although one series of cases reported mortality as low as 6.4%.[
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