Project Shocking

In Loving Memory of Amy Rae Elifritz 1989-2010

I am the mother of a 20 year old girl that died in June from Toxic Shock Syndrome. My daughter was using a Playtex tampon. I’ve been doing an inordinate amount of research since her death in June, and have been sending out information daily via a pamphlet I authored with help from a PhD. known nationally for his research of Toxic Shock Syndrome. I also have been utilizing social networking and visiting high schools to point out the symptoms and prevention of tampon induced TSS. Many of these young women do not yet have the antibodies they need to use tampons containing viscose rayon.

Ladies have been contacting me daily to tell their personal experiences of TSS or share the story of their child who died of TSS. It’s unfathomable how the numbers are rising. The sad part is, every single instance of TSS I have personally heard about was using Playtex. I’m sure it isn’t only Playtex brand, but these are the instances I’ve heard about.

My daughter was only using “regular” absorbency. Regular absorbency isn’t absorbency that is focused on. Amy was a hygiene freak, and changed her tampon like clockwork in fear she would get TSS. It still killed her. Another friend of mine almost lost her 15 year old daughter; not because she was using a tampon, but because of a fiber left inside her a week later. Her daughter is now recovering from reconstruction of her toes due to TSS. TSS is killing young women everywhere. I believe it’s every bit as bad as in the 1980’s; however, no one knows it. Even Playtex says on their warning label that 1 to 17 of every 100,000 menstruating women PER YEAR will get TSS. If you figure that out, how many menstruating women are there; maybe 15% of the population? The population of the U.S. is over 307 million. That means that there can be up to 7,800 cases of TSS a YEAR. Up to 25% of these young women will die, that’s almost 2,000 lives! People aren’t reporting to the FDA; the FDA isn’t policing the factories responsibly. They are under the grandfather clause with the FDA, so their new products aren’t going through appropriate testing. They don’t have to report what is in them. TSS isn’t reportable to the CDC; yet the CDC gives out numbers of cases. This isn’t right. People are led to believe these CDC reported numbers which gives them a false security.

On to the Robin Danielson Act; 2001 H.R. 360, presented by Representative Carolyn Maloney D NY; the bill would amend the Public Health Service Act requiring TSS to be reported to the CDC and would also force the industry to list the content of tampons on the box. The bill has been thrown out continually for the last 13 years. I looked into the tampon industry CEO’s political contributions to Congressmen. You can guess the outcome. In my mind this isn’t adding up. I believe the fate of my daughter was sealed because of this corporate conduct.

I’m currently starting a non-profit organization called, You ARE Loved, (the letters ARE represent my daughter’s initials, Amy Rae Elifritz) to educate girls in high schools across America of the symptoms of TSS, what to watch for and how to prevent it. They need to know! TSS symptoms resemble the flu! It isn’t just super absorbent tampons, it’s regular tampons too; anything with viscose rayon in it. Warnings say to watch for a rash or peeling. The rash isn’t likely to be presented until TSS is beyond recovery. The peeling of skin isn’t until at least 7 days to 2 weeks after it begins (provided you aren’t dead yet).

Playtex’ annual report in 2007 reads, “Our Feminine Care marketing strategies have leveraged the strength of the Playtex brand that caters to the active, young female. Our Feminine Care marketing strategy centers on attracting first-time users, converting users of competitive products to our products and converting full-time feminine protection pad users to tampon users by communicating the advantages of tampons. In addition, we have developed the website, www.playtextampons.com, to provide information to adults and adolescents in choosing the right products“.  These adolescents are the exact age group that hasn’t developed the immunity to the S. aureus bacteria. They are the most vulnerable people in the world to TSS.  How can we get the warning out to these young women that TSS is real and happening when the industry is pushing so hard to reel them in?

TSS of the 1980’s is history. 2011 is NOW and TSS is happening! Lately I’ve seen medical professionals on TV talking about TSS.  They keep repeating that TSS happens only with use of super tampons and to change frequently. My daughter changed every 4-6 hours! I know; I bought them! Actually the toxin begins to develop 2 hours after inserting a tampon and continues to multiply even while changing tampons. This toxin continues to increase as long as you are wearing tampons. The only way to dissipate the toxin in the vaginal canal is to use a pad for at least 8 hours between tampons. I’ve never heard anyone publically explain why alternating with a pad is so important! It’s a very understandable explanation. The only way to prevent TSS is with 100% cotton tampons or pads alone.

The reason you can’t find cotton tampons in big stores is the companies that produce 100% cotton tampon are small. Cotton is expensive! These companies cannot afford the advertising to meet the requirements for shelf space at Walmart, CVS, or Walgreen. You have to order them online or go to a specific health food store. What 15 year old will wait 3 days for mail order delivery of a tampon when she needs it now? It’s like a 3 day waiting period to buy a gun.

I need help getting the word out. I can point you to the research, the professional journals, and the microbiologists that can back me up on everything I mentioned. The medical community is in the dark and it’s not their fault. I want TSS symptom posters on every ER wall in this country – symptoms and first actions. If a woman comes into the ER with a fever and flu, CHECK FOR A TAMPON! If she has one in, REMOVE IT!! Conscious or unconscious, remove the tampon or she will die. The medical profession needs to be educated in tampon related TSS; they are led to believe it no longer exists.

Shortly after my daughter’s death I received a thank you message from a mother for saving her daughter’s life. Last night I was told that because of my information a second life was saved. The feeling I get from these messages is beyond words. I take no credit for this because everyone needs to be educated. Saving lives is the result of the education.

There is now a test; the TSST-1 antibody test that will identify if a person has the antibodies which make it safe to use tampons containing viscose rayon. My local hospital doesn’t offer it … Yet. We need to test these young girls or provide symptom education for them and for medical staff along with funding for research to develop a vaccination that boosts antibodies to the toxin produced by Staphylococcus aureus. What more can I do as a citizen without help? It’s time to recreate awareness for the new century of TSS. This is an important public service for this story to be told/this warning to be given.

Grieving Mother,

Lisa Elifritz

 

The above is my interpretation of the research I have done since the death of my daughter to Toxic Shock Syndrome. It is not my intention to imply fault to any company, organization or individual. It has been approved by a nationally known microbiologist/toxic shock expert. 

Originally posted on Facebook in March 2011

Comments

  1. Can’t say enough about this website – its alot better than mine.
    My site is about Teenage depression.

  2. Thank you for sharing this story. You are an amazingly strong woman to go through such a tragic loss and yet here you are teaching other young women about the risk they take every time they insert a tampon. I just recently switched to the Instead SoftCup, and plan to switch to a DivaCup or MoonCup in the near future. None of these options have been linked to TSS, and they seem to me to be more sanitary than a pad which can have a foul odor.
    What made me start looking for an alternative method, besides TSS, was when I held a Tampax Tampon up towards the light one day and pushed the applicator to eject the tampon itself. I was disgusted to see all the ‘dust’ looking fibers that started floating around!
    I am truly sorry about your daughter, I noticed she was only 2 months older than myself. I will be sharing your website with every female I know, it could just save their life.

  3. Thank you for creating this website. Ever since I started using a menstrual cup, the major point I make among my peers (aside from the reduction in menstrual product waste) is that they carry no reported risk of TSS. People truly don’t realize how important and prevalent this matter is. Many shrug at 2,000 lives per year out of “how-many” that survive or aren’t affected by TSS. To paint a picture, there are 2,000 people residing in my hometown. This is not an insignificant number. I will share this website with friends and family and I hope that they’ll take the time to look it over. As others have said, it could save their life.

  4. Rachel jacobson says:

    I am truly sorry for the loss of your dear daughter. As a mother of two small kiddos, I cannot fathom the scope of such a loss. I appreciate your information and will share this with people I know. Thank you for turning such a tragedy into an opportunity to educate, influence, and save lives. Keep fighting the fight, and keep your head up.

  5. How can we pass the Robin Danielson Act? I want to help. We need to get the word out. I am so sorry for your loss. I can’t believe tampon companies can get away with not adding the “ingredients” of the tampons to the box. The FDA and CDC need to get on this immediately. It’s appalling.

  6. Taylor, contact your congressman in your state and ask them to co-sponsor the Tampon Safety Act.

  7. THANK YOU for sharing your story and putting your entire heart into educating our young daughters.
    My love and prayers for you and your family. I am so sorry for your loss. What a beautiful way to honor her memory by saving others.

  8. Attorney Tom Riley of Cedar Rapids, Ia was the 1st lawyer to go up against the big makers of tampons….and he WON. He might be of help to you.

  9. cynthia harris says:

    Hi! I want to say first that you and your daughter are in my positive thoughts and prayers. I think you are an awesome mother, because in the midst of your grief, you are out here in the world, trying to make it safer for girls, so that no other girl has to lose their life, and no other mother has to lose her daughter. I want to Thank You for spreading such valuable knowledge! It is a sad shame that in our society money and the greed of it is more important than educating young women, and in my opinion: taking tampons made with this toxic material off the market Forever! I grew up in the age of the TSS scare in the 80’s, this was when I was starting my menstrual cycles. My mom used them religiously, and left the choice up to me to use pads or tampons. I read the information one day about TSS (when I was bored) and I couldn’t believe what I read! Thank God I read it, because it probably saved my life, I never wore tampons because of that pamphlet with the tiny fine print included in the box, and I am 42 now! I have 2 teenage daughters, and I have educated both of them about TSS, and both of them, on their own, have chosen NOT to ever use tampons! I have told everyone I know throughout my life about TSS when ever I find out they use tampons, but many people have just brushed it off, like it couldn’t happen to them. I’m glad I came across this site, because I will be posting it to further spread the word and I believe it WILL save lives! I am so sorry for your loss, but I am so thankful for you and the knowledge you are spreading, and in doing what you are doing, the memory of your daughter will live on forever!

  10. I just wanted to say thank you. I had no idea about this. I have 3 daughters one is a preteen and we will be heading down the road of her monthly cycle soon. Thank you for putting this information out there.

  11. Have you started a petition on change.org? You will reach a huge people base and they really can make the difference in getting a law passed.

  12. Your post moved me to tears. My heart aches for you in the loss of your precious daughter. Until I read your post (via the link on Pinterest) I hadn’t heard of TSS for years. Why is our country not more aware of this and fighting for our women? I honestly thought TSS was a thing of the past. Thank you for setting us striaght. Companies seem more interested in profit and in making sure all men who want it have access to Viagra, rather than making tampons safer for women to use. If men needed/used tampons you can bet something would have been done long ago to make the products safer. God bless you and help you continue to get the message out there. Thank you for your courage and strength.

  13. Sharron Walters says:

    Hi, Thanks for sharing your experience. My daughter, then 15, was one of the lucky ones and survived TSS with a little lost skin and hair. I am trying to find info about long term affects .She is on her 4th cold this season, and we are really trying to figure out if other parts were compromised. Also, she now has to wear glasses. I’m wondering if there is a univ. doing research? How do we ck other parts internally.? My doctor upset we, because she said if you were an adult with that low of blood pressure, we prob. wld have sent you to emergency in an ambulance. Geez. Could they have told us anything upfront? Plus, the er people said there was another teen girl, same pearl tampons 2 wks early. And would you believe, that they aren’t even reporting it? thanks for your blog.

  14. Crystal says:

    My sister-in-law recently survived from toxic shock syndrome. She had a very sever case and we are luck to still have her. She has been home from the hospital for a little over a month. She has many things happening to her and her body that know one seems to be able to answer questions about. If anyone on this site could help direct us to a place/wesite/doctor that may be more helpfull we would be so very grateful! I have set up a page on fb for her called “Lindsay Mckeever Care Fund” that would be a good way to contact us. I am so sorry about your daughter. This is a horrible illness that gets far to little attention. Thank you for any help you can give us!

  15. Liz stack says:

    Should I stay away from them I’m 15 and used them for 4 days I’m to scared to put one in for two hours

    • Hi Liz,

      There are wonderful options to traditional tampons (the ones containing rayon and other super absorbent fibers).

      Here’s a short list:
      100% cotton tampons (Maxim Hygiene, Natracare, Seventh Generation)
      Instead SoftCups – reusable and disposable
      Reusable menstrual cups (MoonCup, Keeper, Lunette, DivaCup, etc)
      Disposable pads
      Cloth pads

      Menstrual cups are wonderful options because they can remain “in” for hours.

      Thanks so much for writing!
      Suzan

  16. Hello. I am now 19 and i had tss when i was only 7 years old. Ever since then I get sick easily. I got told that i should of died. The doctors do not know how i survived, because i started going to to multiple organ falier. All i really remember from it is waking up not knowing where i was at (i was in the hospital). Then after i was out of the hospital i wasn’t allowed to go to school or outside because my immune system was so bad. I got told that it would never be same.

    I never knew you get tss within 2 hours of putting a tampon in. I know now that I have to be more careful when I’m menstruating.

    • Hi Alexis,
      Menstrual cups are great options to tampons and don’t carry the same TSS risk. I hope you will check them out. Women who have had TSS before have a higher chance of getting it again. I’m sorry you got TSS when you were so young.

  17. Thank you so much! I’m so glad I found your site. I have decided to discontinue my use of tampons.

  18. Traci Coker says:

    Thank you do much for sharing your story. I am very sorry for your loss. I just started talking to my daughter about using tampons. Now I will tell the danger of TSS and we will opt not to use tampons.

  19. Meredith Haynes says:

    My sincerest and heartfelt condolences to you. I clicked on the beautiful “you are loved” heart on Pinterest which bought me to this site, I’m so glad I took the time to read your message and I’m so sorry you had to lose our daughter in this tragic way. I will certainly spread the word here in Barbados as this seems like something that could easily be misdiagnosed down here when it is too late. Keep spreading the word in your daughter’s name, I will be sure to do the same!

  20. I never liked tampons and after reading about TSS I couldn’t bring myself to use them anymore, it wasn’t just because of a possibility of TSS but also just how gross they are – especially with a heavy flow.

    I’ve been using a Lunette Menstrual cup for the past 2 years, it’s about $30 but you only need one for about 5-7 years. It saves tons of money and I actually feel better than when I was using tampons and pads. It doesn’t even feel like I’m on my period and the cramps aren’t as bad(though they’re still crippling). Perhaps instead of just informing youth about the dangers of TSS, we should also inform them of better and more convenient options. Tampons and pads aren’t the only thing out there.

    *Cups have been authorized by the FDA(in US) for a while now, however the brands on the shelf in the US for now are fake knock offs of the originals.

    Side note: The only thing with using a cup is that you have to disinfect it before you put it away until you need it next. It isn’t hard and can be done in the shower using hand disinfectant gel. Make sure the holes are clean and unplugged or it won’t work too well!

  21. I was just curious. Can you get tss if you have the antibodys?

  22. My 12 year old daughter got her first period today. She just came to me to tell me she wants to try tampons. I’ve always used pads so I went online and started researching what kind to get her when I go to the store tomorrow. I haven’t even heard the term toxic shock syndrome for years and if I hadn’t found this website I would have just bought her something off the shelf without a second thought. From one mother to another…thank you.

  23. I am so sorry for the tragic loss of your beautiful daughter. I understand how enraged you must feel by the underreporting and misrepresentation of this disease. I want you to know Amy’s story has made me personally commit to never buying tampons again. I do not want any of my money going to companies that hurt women. I don’t care how “rare” they purport TSS to be. Rest in peace, Amy.

  24. Thanks for your story. I am really sorry about your daughter. RIP. Knowing this I will not use a tampon at ALL.

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  26. Can I simply just say what a relief to find someone who
    actually understands what they are talking about online.
    You actually know how to bring a problem to light and make it important.
    Morre people must read this and understand this side of your story.
    I was surprised you’re not ore popular sice you definitely have the gift.

  27. Thanks for finally writing about >Project Shocking <Loved it!

  28. My 15-year old daughter has been using tampons since she started her periods when she was 12. During the last several months she’s noticed that she feels awful when she uses tampons. Once she takes them out, she still has nausea for about 2 days. She is using the disposable soft cups now and finds them comfortable and easy to use. We have an appointment with a doctor’s office on Oct 1 (3 weeks from now). She tried the tampons again this month and is feeling sick now and has a rash on the inside of her leg. If she complains of any new symptoms, we’ll head to the doctor sooner.
    You are courageous for turning your tragedy into something that will help others. I am so sorry for the loss of your daughter. Thank you for helping us to keep ours safe!

    • This is exactly how Amy was many times before her big TSS episode that killed her. Please know that your daughter is getting TSS every time she gets sick like this and it’s destroying her bodies abilities to produce antibodies to TSS ever again. She must stop using tampons forever or risk death!

  29. Is regular rayon safer than viscose rayon? Both of my tampon brands list they have rayon in them, and I’m a bit nervous. I just started using tampons at the age of 29 (been an avid pad user since I got my first period at 13) and am terrified of getting TSS. My Aunt nearly died from it, and I don’t want to make the same mistake. Thank you to anyone who can answer this!

Trackbacks

  1. […] that provide accurate and factual information.  Don’t miss our TSS Awareness brochure or Project Shocking information.  For hard copies of the brochure or more information, please contact us. Filed Under: Blog […]

  2. […] take a few minutes to help us raise awareness by reading our brochure and my Project Shocking post.  Your efforts could save a life. Filed Under: Uncategorized Tagged With: Amy Ray Elifritz, […]

  3. […] of Amy Rae Elifritz who lost her life (read Amy’s story and her mother’s powerful post Project Shocking).  Learn more about TSS via our informational brochure and the accounts of many women who have […]

  4. Blog Project says:

    […] Rae Elifritz who lost her life (read Amy’s story and her mother’s powerful post “Project Shocking“).  Learn more about TSS via our informational brochure and the accounts of many women who […]

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