(Ch. 23 of my story of how I became deaf…)
So what was the mysterious, life-threatening illness I experienced in 1981, which ultimately lead to my deafness? The final diagnosis was TSS – Toxic Shock Syndrome.
TSS is defined as a rare, bacteria-caused illness occurring mostly in menstruating women who use high absorbency tampons. TSS is caused from a certain strain of staph, the bacterium Staphylococcus Aureus, which normally live harmlessly on the skin or in the nose, armpit, groin or vagina of one in every three people. In rare cases, certain strains of these bacteria can produce toxins or poisons that cause TSS. It is said that highly absorbent tampons may facilitate the infection because their prolonged intra-vaginal use enhances the bacterial growth.
I don’t remember if the tampons I used before my illness were super absorbent, but the tampon I had inserted sometime in the middle of the night was left inside me for about 6 hours before it was removed in the hospital emergency room that next morning. Sadly, they did not culture the tampon itself to find out if there was staph present because someone threw it away.
In some cases of TSS, it is possible that the inside of the vagina, which is normally mucus-coated, could become dried out from a tampon’s absorbency, and it’s removal may cause a lesion or laceration along the vaginal wall. This could’ve happened sometime during the current or even previous menstrual cycle. Even the tiniest cut or tear would have been an open door for bacterium to enter.
Another possibility is that residue of synthetic pieces from a tampon could have been left behind, thus facilitating bacteria growth, infection, or the build up of toxins.
It is also said that half of the TSS cases result from localized infections, for example following burns, boils, insect bites or surgery. This is probably why the doctors kept revisiting the bulging blister on the back of my heel.
Symptoms of Toxic Shock Syndrome include: a sudden high fever, vomiting, diarrhea, a sunburn-like rash that later peels – especially on the palms of the hands and soles of the feet, an unusual redness that occurs in the eyes, mouth, and vagina, dizziness, light-headedness, confusion, disorientation, decreased urination, fatigue and weakness, thirst, muscle aches, rapid drops in blood pressure, shock, kidney and liver failure.
Even though I had most of these symptoms over the course of two and a half weeks (back in 1981), the doctors did not yet know that I had Toxic Shock Syndrome. It wasn’t until after I was discharged from the hospital that the formal diagnosis was made.
(Footnote: Don’t give up on the story yet. It has been important for me to share what life was like before I became deaf so that people understand the significant transition that occurred when I became deaf — a transformation I not only understand and accept, but also celebrate! Keep on reading! You have completed the beginning chapters entitled: Life Before Deaf, which tell of my experience before I became deaf. You have also completed the middle chapters entitled: Deaf or Death, which tell the dramatic story of the illness that took my hearing. You are now reading the final chapters entitled: My Journey Into Deafhood, which tell of my transitions and waking up to a world of silence. Keep reading! More coming soon…)
My name is LaRonda Zupp.
I am Deaf. Welcome to
"The Ear of My Heart."
I’ve enjoyed reading your post. I remember very well about the TSS in the early 1980′s. The tampon was Rely (I think), but I know it starts with ‘R’. Raly? Riley? or Rely? Whatever it is, but I remember it very well. My mother used to buy me a box of Rely and I didn’t like it so my mom returned it.
I just read your comment that you posted in Amy E’s Vlog, please do not hold your story. I’ve enjoyed reading your story and please continue posting!
Left by Julie B. on July 25th, 2007
Julie B.
Correct! it was Rely Tampons that one of brand they were banned to sell it ever since 1980′s I remember I was 20′s it was serious and Several women were dying and some of them are not make it through. Until they realized Rely Tampon is actually different kind of cotton. Now, it is no longer make one of these. It was very serious.
It was scary and I did received refund of that one of tampons. I am glad they did return money back. Almost 25 years ago.. It is hard to believe that I feel like 15 years ago.. it was actually already passed 25 years.
Glad LaRonda is survivor of TSS
Margaret, from Seattle
Left by Margaret from Seattle on July 25th, 2007
I am really, really happy you posted this story. Other than being wonderfully written, this story contains valuable information, IMO. I’ve been warned about TSS plenty to know that it’s bad, but this page, this part of the story gave me the willies!! I know I’ll be reminded of that every time I use a heavy absorbent tampon!
Left by Heather on July 29th, 2007
LaRonda
Hope you are well – I always wondered what had happened to you to cause your hearing loss. I remember hearing in high school that you had contracted Toxic Shock Syndrome!
You are very special and I wish you the best in all you do!
Victoria
Left by Victoria on July 30th, 2007
I am glad I found your information. This information needs to get out to all women and girls. TSS is still around.
I too have suffered from TSS but only just this year 2008. They say I received staff from touching the tampon before inserting it, giving myself a staff infection. Then within 3 days I had turned what they call septic shock shutting down my organs and being rushed to the hospital. I spent 5 days in ICU. It still took them 3 days to diagnos TSS.
I am doing find now, still get very tired easily when I was a runner before all this happened. Have some other symptoms but nothing major I hope. Still finding out things. There does not seem to be a lot of information out about symptoms after. The doctors said everything should be fine in a week or so. Did not know it could cause deafness, or that 2 months later I still do not have my taste buds back and my legs stiffen if sit longer than an hour. I get headacks often when I never had them before.
I hope more women see your story and keep reading. Thank you for writing it. I wish there are more warnings about Toxic Shock Syndrome, letting people know it is still out there.
Left by Donna on April 6th, 2008
I’m glad to read this story, because people should really be more aware of toxic shock. it is still out there and many people don’t think so. I, too was diagnosed with toxic shock syndrome 2 weeks ago and i am still experiencing the symptoms. my skin has been extremely dry and is peeling, and a few other symptoms along with being tired really easily. i just wish they could find a way to increase awareness. thank you for sharing your story, and i will continue to read.
Left by Amanda D. on January 31st, 2009
My son is 2 years old and suffered from TSSs (the newer brand caused by streptococcal bacteria) when he was 14-months old. We just now started to notice that his hearing is severely diminished and his speech development is deteriorating. We’re awaiting his official hearing screening so his level of hearing loss is not yet known. This website is the first connection I’ve found between hearing loss and TSS, his doctors never mentioned it.
TSSs left him on life support for almost three weeks. We prayed for him to live to the next day so if hearing loss is the price he paid for his life, it wasn’t a bad deal. I hope he will someday agree that deaf is better than death, any day.
Left by Megan on February 19th, 2010
Hi Megan. Thanks for your comment. It’s important for you to seek out early intervention with your son’s language development. These are crucial years for that and any delays will make an impact on his development. I encourage you to seek out the support of language specialists who encourage the use of sign language along with any speech or auditory training. Signing will make all the difference for your son’s connection to the world whether or not you pursue further auditory support. Medical professionals will most likely encourage hearing aids or cochlear implants, but not many think about the language development aspect that can be richly enhanced through sign language. Auditory training may assist with sounds, but signs assist with language. Please consider learning signs with your child. There are huge advantages and benefits.
Best.
~ L
Left by LaRonda on February 25th, 2010
I had toxic shock syndrome in 1991… I was given two hours to live and survived… only to now have massive problems… I don’t think there is enough info out there from people that live from the horrible disease…. Had the piece of paper that I pulled out of the tampon box that month said… ‘if you live from TTS, you will forever have health issues, have to have several surgeries, be in constant pain and not lead a normal life again”…. I might have thought differently about using them.
I have had to have everything that could come out, taken out….. appendix, tonsils, hestorectomy, gallblader, I have had three back surgeries, both hips replaced, surgery on my toe, twice on my elbow… my joints are a mess and now been diagnosed with Lupus…. All because of TTS.
I had the deafness as well and it only lasted 2 months… thank god!
Thank you for sharing your story!
Left by Meese on February 7th, 2011
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, http://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.
Left by Lisa Elifritz on June 7th, 2011
Thank you Lisa for sharing this important story. My heart goes out to you for the loss of your daughter. You’re doing a good thing.
Left by LaRonda on June 9th, 2011
Last summer Amy Rae Elifritz went from being a healthy and happy 20 year old with her whole life ahead to losing her life in a matter of days . . . sadly, this could have been prevented.
Did you know that tampon related Toxic Shock Syndrome is real, relatively common, and can be deadly? Last summer when Amy experienced flu-like symptoms the fact that she was menstruating seemed unimportant. A few days later, on June 13, she died from Toxic Shock Syndrome (TSS).
Lisa Elifritz, Amy’s Mom, founded You ARE Loved to help raise awareness about the link between tampons and TSS with the goal of saving lives. This summer, our new non-profit organization is seeking to mobilize bloggers to help spread the message and is inviting you to write a blog post on this important topic.
I encourage you to read this note, visit us online (website: http://www.you-are-loved.org/ — Facebook: https://www.facebook.com/amyelifritz –, Twitter: http://twitter.com/#!/youarelovedtss), read our informational brochure: http://issuu.com/youareloved/docs/youareloved_brochure, view a two part story by the Indianapolis CBS affiliate WISH-TV (part 1: http://www.wishtv.com/dpp/news/i_team_8/whats-killing-hoosier-women-tss-toxic-shock?ref=scroller&categoryId=10001&status=true and part 2: http://www.wishtv.com/dpp/news/local/marion_county/toxic-shock-i-team-8-investigation-attracts-attention), read a sample of what one blogger wrote: http://thistalkaintcheap.blogspot.com/2011/05/tss-you-are-loved.html (about TSS) and another wrote: http://www.shopaholicmommy.net/2011/06/puberty-education.html (about puberty education), and also to do your own research.
We will be adding a section to our website linking to blogs featuring information about TSS and You ARE Loved. Please share the url of any post you make so that we can include it on that page.
Thanks in advance for considering the opportunity to partner with You ARE Loved in our effort to raise awareness about tampon related Toxic Shock Syndrome (TSS).
For more information, please contact Lisa at lisa@you-are-loved.org or 812-526-6768. Alternatively, you can write by snail mail to
You ARE Loved
Attn: Lisa Elifritz
4801 West Randy Road
Edinburgh, Indiana 46124
Left by Lisa Elifritz on June 11th, 2011