Another Case and Michael

I received this last night!
Hi Tammy,
I don't know how to post to the site, so I am just sending you a message.My 19-year-old son is at UCLA with classic Lemierre's. They virtually ignored his high fevers and sore throats for more than a week. And being a stoic guy like Justin, he tried to say it was nothing. He was finally admitted to the UCLA hospital system, but fortunately,even though it has spread to lungs and skull, he should be okay. I want you to know it is the subject of the UCLA Med school seminar this week. And they are going to also suggest that the medical profession rethink the mentality that you send them home with Tylenol if it is not Strep. Thank you for making your site on the Web. I believe that Justin is somehow helping us get through this. Please keep it up.
Best regards,
Alice

And please continue to keep Michael, as well as all the other people in your prayers. Michael is still in the hospital! His mother sent this update to me this morning,

Michael just had another echo and it shows that the leakage in his mitral valve is slightly less, but it still is a big leak, and the clot is smaller, BUT he has fluid around his left lung now. They will give him lasik for a few days to see if the fluid will go down. We don't really know what this means as of yet. We need to talk to his cardiologist about it.

Thank you to all the nurses and even Dr's that have contacted me letting us know they are helping get the word out! They have all put up flyers around the hospitals they work and is passing around our website to everyone they can.

I have ordered more business cards so if you see me out or would like me to mail you some please let me know. I should have them this week.

The new bracelets are going to be in this week too. We are asking for $3.00 or up donations for these as well as the pin or magnet ribbons we have. If you live out of St. Louis please email me @ sunflwz2@yahoo.com and all we will need from you is a check for the donation and we will get them out to you, I will let you know via email what mailing address to send it to.. Please add $1.50 for postage. I am going to set up an paypal account so if anyone wants to pay via CC they can through them. I'll let ya know when it is up and running.

Awareness and knowledge is the key to battling this disease! Even if you don't know much about Lemierre's that's all you have to say to people.
"I don't know much about this disease but I know it is VERY deadly and has taken the lives of young adolescents all over the US and the world. So please check out this website!"


Luv,
Tammy

Craft Fairs

Well they seem to be going well. We have had a good response and most of the people we are meeting saw us on the News.
Thank you to everyone that has helped us!!!!
We really appreciate it and couldn't have done it with out you all!
I am now researching Taylor Momsen, she was supposedly in the hospital with a life threatening throat disease! She was released already but makes me wonder what it was!!!!!!! She is a 15 yr old actress that plays a role in the TV series "Gossip Girls"

Prayers needed for Michael

Michael is a young man whose life was turned upside down due to Lemierre's back in Feb of 08. He has fought a very long on going battle and has won his battle but today had to go back into the hospital because he has an infection in his heart valve. He has a website of his very own you can visit http://www.prayformichael.com/ I told him and his mother Justin's whole family and all his friends are praying for him. His mother and I have stayed in contact ever since she found out about Justin months ago.. I also learned of a young 18 yr old girl in OH that will most likely be getting a heart transplant too b/c of the damage done to her heart. I'm not sure of her name at this time but we also continue to for pray her.
Thank you!
love
Tammy

Lemierre's

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.SymptomsThe 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.TreatmentLemierre'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.IncidenceLemierre'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%

Welcome to our site!

Please make sure and read all the way through our website. There is a lot of helpful and useful information here. Pass it along to all of your friends. Even bring it up in conversation the next time you take your children to the Dr. Justin's Dr's told me while he was in PICU that people die from this disease they just don't know this is what it is. For some people there is just not enough time to diagnose them so the Dr's believe their death was caused by Pneumonia or strep. Just 5 years ago the statistics were 120 case in 100 years. NOW the statistics are 1,000 cases a year and 100 deaths a year! This disease is coming back and we have to be more aware! It attacks young health adolescents ages 14 - 25. Everyone I have personally talked to that has survived this disease refers to it as their "Near Death Experience!" This disease attacks the body faster then any Cancer or HIV. Justin went into the hospital April 16, 2008 and passed away May 12, 2008. 4 weeks it took this disease to take him away from us. Every case I have read is a little different, it attacks different organs each time. I've heard it attack the brain, the heart, the kidneys and in Justin's case it went after his lungs. We are continuing Justin's fight! Justin was not old enough to be a soldier but in my eyes he IS OUR soldier. He gave his life to save others in my point of view! We are saving lives and educating Dr's and bringing more awareness to this horrible nasty disease! For more information please also visit www.medrants.com This Dr has been studying Lemierre's and sore throats for YEARS!
Thank you!
Justin E Rodgers Foundation for Lemierre's Awareness

NEWS CHANNEL 5 INTERVIEW!!!!!

The interview we did last week is going to air tonight at 10 on Channel 5!!!!

Tags for balloons

Here is something I wrote up if you would like to attach it to your balloons you release.

Justin – HAPPY 18th BIRTHDAY!! We still miss you everyday that goes by. You are our super hero and always will be! Anyone who finds this balloon please know it was let go for a young 17 yr old that passed away from a disease Dr’s know very little about. Please help us spread the word! Justin E Rodgers Foundation for Lemierre’s Awareness Inc
www.lemierresyndromejrodgers.blogspot.com
We LOVE you JUSTIN!

Just copy and paste it in a word document or note pad. ;0)

Happy Birthday Baby brother we love you!

I will take pictures of all the gifts Justin will get tomorrow and post them on the site!
Thank you for helping us make this day so special!
Anyone coming to my mom's please try to be there @ 4.

Justin E Rodgers Foundation for Lemierre's Awareness Inc

We are officially OPEN for Business! I received our Tax ID # today! We can now open a bank account and proceed like a normal Non Profit. We are going to set up tables at craft fairs around St. Louis this Oct - Dec and sell hand made candles, stationary, ribbons and anything else we can think of. We will be attaching cards to each item directing them to this website and asking them to help us spread the word of this disease.
We are also able to accept donations now! Any kind of donations are great! Most people think directly of Money but we can accept anything that will help us spread the word, your time, paper to print on, toner or anything at all. We will soon have a website for our Non Profit! All this in perfect time for Justin's Birthday!
Speaking of Justin's birthday don't forget to release your balloon @ 5:00 Sunday!
Anyone that is going to try to make it to my mom's you can come anytime around 4 and please bring your own balloons. THANK YOU!!

Luv Tammy

My 3rd Cousin Jacob

Hi there! Last Tues I received an email from my 2nd cousin Cindy. She was letting us know that her nephew was sick over last weekend with the flu. After some time passed his dad just couldn't help but think that something didn't seem right and he thought of Justin and what had just happened to us. He decided to take him to the ER. Ends up he has bacterial meningitis. The Dr's told him that if he would have waited any longer he would be in some SERIOUS TROUBLE. When she first told us about him he was still sedated and had a probe in his brain to monitor the swelling. As of today he is awake and looks to be doing much much better! I wanted to share this story with everyone even though it has nothing to do with Lemierre's. We all know and have that little voice in our heads when something just isn't right! Please, please, please listen to that little voice. Jacob I can speak for everyone in our family and every one that reads this site when I say, "We are so glad you are OK and you are one lucky guy to have such a great family! We hope you get to come home soon!"

** Justin's birthday is this Sunday Sept 28th. I have had many emails from all over the US saying they will be joining us in a balloon release in there homes Sunday at 5:00 pm. For everyone that will be coming to my parents house to release balloons we are asking that everyone please bring your own balloons with you. We have no idea how many people will come but please bring your own balloons. Any color that you like! I am going to print out tags for you to attach to the balloon if you like.
Thank you!
Tammy

Check this out!!

I received this email just a little while ago!

Hi Tammy,

Just wanted to send you a quick email about something I thought might interest you. I am from Toronto, Canada, and a friend of mine is in medical school at the University or Toronto. The other day in class they did learn about Lemierre's syndrome, the bacteria that causes it, and that it's prevalence is on the rise! I was surprised, but very happy to hear, that future doctors in Toronto at least are learning about it in medical school. Just thought you'd be happy to know that too!
Talia

I'm very happy to hear that Lemierre's is being brought to Dr's attention!!!

Justin's article

Well between my sister, Stephanie and I think we went to close to 30 stores trying to get our hands on a New York Times. I finally was told the magazine actually comes inside the news paper and that you can find the news paper in the boxes outside the stores. Anyway I never did get my hands on one but Stephanie says she bought some for us. We are also going to call Dr Lisa Sanders (the Author of our article) and see if she could send us some. I think I'm going to call some places tomorrow to see if we can get our hands on a couple more. I didn't realize how spread out they are. I thought it was kind of like the Post Dispatch everyone sold them. Anyway it is a GREAT informational piece! Thank you so much Dr. Sanders for helping us get our word out!

Love, Tammy

Well it's out!!!

Here is the link to the article!

http://www.nytimes.com/2008/09/14/magazine/14wwln-diagnosis-t.html?_r=1&sq=lemierre&st=cse&oref=slogin&scp=1&pagewanted=print

more and more cases

I have had 3 more cases emailed to me this week!! AND did you hear!!?!!? One of Dr Phil's young interns had strep throat and then passed away 1 week later. Kinda of interesting huh! Well I emailed the show 3 times letting them know about Justin and our website and that I heard of the intern that passed and thought maybe he had Lemierre's, but no word back. Justin from ID his mother said they had 5 cases of Lemierre's pop up in the last 6 months!!! They did a news paper interview and gave them our website info for people to go to to learn more about Lemierre's!!! If you get a chance to do any interviews or talk with any people that can get our info out as well please do so. I have soo many ideas running through my head on ways to bring about awareness! I would love to just start contacting all the major city's news papers and talk to them all about doing an article.. Don't forget the New York Times Magazine comes out Sept 14th!!! Also Justin's birthday is Sept 28th in 3 Sundays please, please, please release a balloon to him at 5:00 that evening and wish him a happy 18th birthday! Take pictures and send them to me if you could. It doesn't matter if you live in CA, ID, WI, Canada, Mexico we would love to see everyone that did this for us so take pictures and email them to me @ sunflwz2@yahoo.com The 2 colors we are using to promote everything we do is Green and Blue.
Thank you to everyone that emails me their stories about their Lemierre's battle!

New pictures & Justin's Birthday

My mom and I added some new pictures to the site during the last week. If anyone has pictures of Justin they would like us to possibly post or would just like to share with my family and I please email them to me. sunflwz2@yahoo.com

Justin's 18th birthday is Sunday Sept 28. My mom would love for everyone to release a balloon on that day in honer of Justin. It doesn't matter where you are CA, FL, CO, Canada, Mexico anywhere if you would like to release a balloon for Justin we would appreciate it. I am going to make up little tags to put on the string of the balloon. You all can copy and paste it onto a note pad or word document and print it out then attach it to the balloon and let them go 5:00 pm your time Sunday Sept 28th. Take pictures if you can and send them to me. We can post them here and let everyone know what part of the country or world you are in. Anyone in St. Louis can come to my mom's and let their balloon off with us if you like. If not you can let them off at your house or park or anywhere you chose! I will post more about this as we get closer to the date. ;0) OH and don't forget Sept 14th pick up a New York Times magazine and check out the article about Lemierre's! It's Justin's story but I don't think they are going to give out his name!
Thank you very much!!!
Luv,
Tammy

Lots of Hits

We have had lots and lots of new people to our website in the last 3 days!!! Over 500 just in the last 3 days!!! We have had over 2,000 in 2 months!
We decided on a name for our nonprofit, Justin E. Rodgers Foundation for Lemierre's Awareness!!!! Our lawyer is working on all the paperwork now.
I have had 4 cases of Lemierre's emailed to me this week that have all occurred over the summer!!! The emails just keep coming from people who have been effected by this disease. And all the stories sound so much a like. Everyone at the end of their email always asks if there is anything they can do to help. I really appreciate that. The only thing I can say in return to that is request a flyer and maybe put it up around your home town. OR Fwd it in a email to everyone in your address book. That's about all we can do right now is talk about it to people and pass the word around more. If you don't know very much about Lemierre's just take the person you are talking to to our website. Once we get our Nonprofit up and going I will be asking for Volunteer's all over the U.S. and then some. I will actually have a website where you can sign up to volunteer. You don't have to be here in St. Louis to help.

Thank you so much to everyone that has helped us get the word out!!!
luv,
Tammy