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Thursday, December 30, 2010

Singapore

This just posted out of Singapore:
SINGAPORE: If you have a sore throat, coupled with neck pain, giddiness and a fever that doesn't go away, you should see a doctor immediately. You may be suffering from the "Lemierre's syndrome" which is rare and potentially lethal.Experts said, there have been fewer than 10 such cases in Singapore over the past 10 years. But this month alone, two cases have been reported.One of the patients was 32-year-old Vincent Leo.He thought it was just the flu when he had a sore throat and fever two weeks ago. But when he did not get better, he saw a doctor and found out that he had Lemierre's."I kept vomiting and having diarrhoea at night. My left side of my face swelled up a little too. It was even painful to eat and drink," said Mr Leo.Dr Jagadesan Raghuram, Chief and Senior Consultant of the Department of Respiratory Medicine with Changi General Hospital, said: "The common bacteria that we have in our oral cavity usually causes this disease...some of these bacteria for one reason or another becomes pathogenic, meaning they invade, and become a cause of the disease."What it does is the bacteria, apart from causing local problems like gum disease or local cavities...it can actually spread through the tissues in the oral cavity into the neck...the bacteria that causes this infection actually causes inflammation in the surrounding vessels of the neck."And the bacteria can actually seep to other organs like the lung, liver, kidneys, spleen. And if the infection is not controlled or treated aggressively, upfront, this can cause organ failure and death."Dr Raghuram said the disease affects young adults between 20 and 40 years old. Treatment includes a four-week course of antibiotics. For the first two weeks, the patient needs to take the antibiotic intravenously in hospital followed by another two weeks orally. Antibiotic treatment can be stretched to six weeks where needed.He added that patients are also treated with blood-thinners for three to six months because the disease usually involves blood clots in the veins. Dr Raghuram said medical records show that only one patient here has died from the disease. He said the rare disease occurs in about only one in every 1.25 million people.

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

Thursday, October 21, 2010

This sat!!

Paintball Fundraiser is this Sat!!

I just went and bought all the food!
it's 11:30 - 3:00 (games start at 12)
must be at least 10 yr old to play. If under 18 you must either have a parent with you or a notarized waiver ( I have one I can email to you)

$20 includes all your equipment, a t shirt, lunch, drinks and a $5.00 off coupon to pasta house!
Now that's a deal!
Come hang out with us even if your not into paintball!
The Crux
(Wellspring Wesleyan Church)
2396 Highway A
Washington MO, 63090

Food available for those not paintballing at a CHEAP price!
Suppose to rain a little but don't let that stop you from coming out!

Tuesday, September 28, 2010

Happy Birthday Soilder Boy!!

Happy 20th Birthday Justin!!
I had another dream about you the other day!! I was so excited to see you and you didn't understand why? I just kept hugging you and I wouldn't let go! You were so embarrassed! It's weird because the dreams I have of other people it is them but it's either not their face or I can only see from the chest down. In the 3 dreams I've had about you or that you've come to visit me in it has been your face and every detail about you has been right. But every time I wake up for about 5 min I'm so happy I got to see you again but then I realize how mean that was!!! I get to see you for a few moments and then you're gone!
Today on the way home I was changing stations on the radio and I heard this song that caught my ear. It was so pretty (I know you don't like pretty songs) it was all about what that person would want if they died to soon. It was actually a very strange song but it made me think of you and some how it made me feel like I was meant to hear it today at that exact moment! The name of the song is "If I Die Young" by The Band Perry. I know you're here everyday with us. Antonio was outside today (it was a absolutely beautiful day) and he kept looking up at the sky like he saw something I thought maybe it was a bird but honestly nothing was there. I've always heard that babies and small kids see things we don't. I swear when he stare at the ceiling or into my eyes I look soo hard to see if I see your reflection! Cruz has a lot of your facial expressions and definitely your attitude. Allen was so excited to get your guitar for his birthday. He really misses you! We all do! Kristiana is such a smart pretty little girl she knows exactly who you are! I told Allen and Cruz that have to tell Antonio and her all about you when they get older!I hope you had a great birthday in Heaven today!
Love you,
Tammy (your older yet shorter sister!)

Wednesday, September 22, 2010

How about a game of Paintball!?!?!?

We are going to try a new type of fundraiser!
Something I know my little brother would enjoy if he were still here with us!
Something that all his friends will enjoy and we can all afford!
Something that any age can participate in and have a blast!

Saturday Oct. 23rd is going to be our first Paintball Tournament!

It will be held at the paintball fields at
The Crux in Washington MO,
(which is the same location as Wellspring Wesleyan Church park in their parking lot & walk behind the building)
2396 Highway A
This is about 25 min. from Eureka

Time is 11:30-3pm

There will be food & drinks available, all paintball participates will receive lunch at no extra cost, all others will be able to purchase food for a small price. Drinks will be provided for everyone with no charge.

The minimum age to play is 10, if you are under 18 you MUST have a waiver filled out and signed by your parent or guardian in order to participate. If your parents will not be with you the waiver MUST be notarized or you will not be able to play!!! This is a very strict rule there is no getting around it. Email Tammy @ sunflwz2@yahoo.com and she will send you the waiver to have filled out. If your parent will be with you there is no need to fill one out ahead of time we will have them there.

Invite ANYONE you like!!!
Go to http://www.facebook.com/#!/event.php?eid=151559128209396&ref=ts
YOU MUST BE LOGGED INTO FACEBOOK BEFORE YOU CAN GO TO THAT PAGE.
and let us know if you will be able to attend, if you click on "Select guests to invite" on that page you can invite everyone from you friends group to come as well!!
We need to make sure we have enough food for everyone so please RSVP, ASAP! The paintball field can only hold up to 60 people so RSVP NOW! I already have 10 people saying they will play. You can RSVP by emailing Tammy or doing so on the facebook page for this event.

I took my 11 year old son here a few weeks ago & all the paint came out of his shirt in the wash! Here is what they say about what to wear and what everyone will get.
"Participants may bring their own paintball guns and/or mask, but for safety reasons everyone must use our paintballs. Please encourage everyone to wear shoes with long socks and long pants. Long sleeve shirts or sweatshirts are also encouraged but not required. We have masks, chest/back protectors, and neck protectors available at no additional cost. The rental guns we provide are Tippman 98s."

It hurts when you get hit by these so come prepared!

So how much does this cost? I'm sure your asking...
It is $20 per person and that includes
*3 hours of play
*500 paintballs
*A Mask
*Gun
*Chest & back protector
*Lunch
*Drinks
*$5.00 off coupon to Pasta House
*And a Lemierre's T shirt with my brother's pretty little face on it!! ;0)

Please get ahold of us and let us know if you plan on coming!! You can also comment on this post and let me know as well.
Alcohol is not allowed at this event!
Below are the rules of the facility, we must follow them remember they are helping us to raise money for our cause and letting us use their items!!!

Thank you!!
Tammy Valencia

General rules
1. All participants must be registered with a signed liability waiver. For participants under age 18, liability waivers must be signed by a legal guardian.
2. Children age 10 and under must be accompanied by an adult at all times
3. The Crux is not responsible for participants’ lost, stolen, or damaged personal property – keep up with your stuff.
4. No Fighting – (we prosecute fighting)
5. No Verbal Abuse including, but not limited to: profanity, name-calling, or racial, ethnic, and/or religious slurs will be tolerated under any circumstances.
6. No weapons allowed on property
7. No illegal drugs or alcohol allowed on the property. (we prosecute illegal drug possession) Anyone using or under the influence of alcohol or any other substance will be ejected from the property. Repeat violators will be banned from the facility permanently.
8. Smoking is only allowed in designated areas – (main porch and parking lot)



Paintball
1. SAFETY GOGGLES must be worn by anyone in the playing field and target range at all times. Only Goggles meeting ASTM guidelines for
paintball with full-face and ear protection are allowed. Modifications are strictly prohibited. Neck and chest guards are provided at no charge
and recommended.
2. NO SHOOTING in any areas other than the designated playing field and/or target range. No shooting into or out of the registration area,
neutral zones, or parking area or at houses, or automobiles. Markers may only be discharged on the active field of play or target range. DO
NOT SHOOT OVER OR AROUND THE NET!
3. NO BLIND SHOOTING
4. ALL JUDGE’S DECISIONS ARE FINAL. Players or spectators will not be allowed to argue with the referees under any circumstances.
5. BARREL BLOCKING DEVICES must be used at all times in every area of the property other than the designated playing field and target
range. Barrel blocking devices must be specifically designed and manufactured for paintball markers.
6. NO CLIMBING on trees, vehicles, or any structure 4’ or higher.
7. NO PHYSICAL CONTACT between players or with judging officials.
8. NO CONSTRUCTION OF BOOBY TRAPS
9. NO UNAUTHORIZED EQUIPMENT or potentially dangerous gear is allowed. All firearms, knives, machetes, paint mines, etc. are strictly
prohibited. The field operator must approve all equipment prior to use.
10. PROPERTY & EQUIPMENT MODIFICATIONS ARE PROHIBITED. Players are not allowed to modify safety goggles, rental markers,
bunkers, or any property on the premises.
11. SPECTATORS are required to wear safety goggles unless they remain a minimum of five feet behind the safety netting at all times. No
exceptions.
12. TANK-FILLS players are not allowed to perform tank-fills (no exceptions).
13. LEAVE WILDLIFE ALONE do not shoot at, handle, or in any way harass wildlife.
14. VELOCITY SETTINGS ARE STRICTLY ENFORCED all velocity settings must remain at or below 260 (fps)






Friday, August 13, 2010

Exciting stuff going on!!

There are some exciting things going on in the life of Lemierre's Awareness!!!

About a month ago I received an email from the casting producer for "Mystery Diagnosis." They are very interested in producing a show on Lemierre's!!! And then Thursday I received a email from Dr. Centor saying the Study has been approved!!!



The University of Alabama at Birmingham is conducting a study of Lemierre’s Syndrome focusing on the duration of symptoms prior to hospitalization, length of stay, and cost of care. If you are 15 or older and have a history of Lemierre’s or are the parent of someone with a history of Lemierre’s please click here to participate.
Study entry process - http://www.medrants.com/lemierre-study/study-entry-process
For a preview of the consent form: http://www.medrants.com/lemierre-study/consent-form
For a brief description of the study - http://www.medrants.com/lemierre-study

Tuesday, May 11, 2010

Fundraiser in Romeoville IL

I have added a flyer to the side of this website to announce a fundraiser taking place in Romeoville IL to help out Chris (CJ) Schwarz. Please check it out and if you live in that area stop by to help them raise some money for their hospital bills. They are also going to send us a portion of the profits of this fundraiser! Here is what the flyer says!

Have You Ever Heard of Lemierre’s Syndrome?
Neither had any of us…
The friends and family of Chris (CJ) Schwarz are holding a Benefit/Fundraiser to help with extraordinary medical costs incurred from his battle with this disease.

We have also chosen to donate a portion of all proceeds from this event to the Justin E Rodgers Foundation. The family of Justin, who was 17 at the time he lost his life to this disease, has created a foundation dedicated to providing information on Lemierre’s to medical and health professionals and facilities as well as the general public, so that
other lives may be saved

Chris (CJ) Schwarz (proud new uncle!)
Chris is a 19 year old former graduate of Romeoville High, he was an RHS Madrigal singer, and a dancer with the Bolingbrook Park District Danceforce for years. He was athletic and healthy when he was diagnosed with a strep throat in February. Within a few days, he was in the hospital ICU and diagnosed with Lemierre’s Syndrome which had already spread to his lungs. After a week long stay, he is currently home under continuing medical care and slowly recovering.
Lemierre’s Syndrome is a rare disease, that is becoming more prevalent. It affects young healthy individuals, generally in their teens and twenties. It is a very fast-moving bacterial infection, that can cause permanent organ damage and death if not diagnosed in time. It can require long-term treatment; and pain and fatigue may continue long after it has been brought under control.

Please come out and help, and get more information on this potential killer.
Enjoy the music of “Junior Terrace Blues Band”. Food will be provided, there will be a cash bar, and we’ll have raffles and drawings to enter. Hope to see you there, and Thank you for your support!

Sunday, May 23RD
Leo’s Bar & Grill
201 E. Romeo Road, Romeoville, IL
1PM - 5PM

Private donations will also be accepted at any Harris Bank location under
Christopher J. Schwarz/ Lemierre Syndrome Fund
Tickets will be available at the door for $15.00 Under the age of 21 - $10.00
Contact Sue Leonard - 815-886-2257 or E-mail: SUEL321@hotmail.com for more information.
You may also purchase tickets ahead of time with the above information.
A very special Thanks to the doctors, nurses and staff at Bolingbrook Adventist Hospital.
Your wonderful care and compassion are greatly appreciated!

Wednesday, February 24, 2010

Google Alerts

When my family and I first started this mission I set up a "Google Alert" for the word Lemierre's Syndrome. This simply means anytime that word is posted on the internet I would get an email and a link to the website it was posted to. At first I would get maybe 1 or 2 emails every few weeks. MOST of the time it was junk and some sort of Spam. However, in the past 3 months I have received at least 1 a day. And in the email have been 3 links of 3 different websites that have posted something about Lemierre's. In the past it was 1 or 2 links at the most per email. I believe the word is really starting to spread! I have read 3 news articles and seen 2 stories in the News in the past 2 months. I think people are starting to open their eyes and see that it could be more then just viral. I do believe Dr. Centor has had a lot to do with this!!! A few people have posted comments on here stating they found our site after hearing his lecture. My plan is in March to send out another batch of letters to ER doctors! I'll let you know how it goes!
Thank you to everyone that has shared their story with me!
Love,
Tammy

Friday, January 29, 2010

So many more cases

I'm not sure if the word is finally getting out or what is going on but in 1 week I had at least 5 cases emailed to me and then today I found a news station that had a story on Leimerre's yesterday.
http://www.9news.com/seenon9news/article.aspx?storyid=131693&catid=509

There have been 2 cases here in St. Louis in the last few months.

Thank you to everyone that shares their story with us and helps us to continue in this battle!
I'm now a stay at home mom which I am very excited about for 2 great reasons!!!
One I get to stay at home and be the full time care giver to my 4 children (well 4 when the newest addition arrives hopefully next week) and two I get to spend more time in this battle and getting the word out about this disease.
I have pamphlets printed up all I have to do is start mailing them to those that have requested them. I would like to have another mailing go out in March for ER doctors. These seem to be the next set of Dr.s that tell the sick "It's viral go home and rest".
Thank you again to everyone!
Love,
Tammy

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Music


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.