By Bianca Battaglia
Menstrual Toxic Shock Syndrome (mTSS) is a disease in which Staphylococcus aureus bacteria produce toxins that contaminate the bloodstream. These toxins, in turn, quickly travel throughout the body and overstimulate the immune system to the point where it can no longer protect the body. The Staph. aureus can enter the body through the use of a tampon, as the warm temperature, moisture, and blood creates the ideal environment for the bacteria to grow. Symptoms of mTSS often mimic the flu, and include headaches, chills, vomiting, disorientation, and seizures. Due to misdiagnosis, 90% of mTSS cases go unreported. If caught early, mTSS can be treated with antibiotics. However, if misdiagnosed, toxic shock can have devastating effects on the body. The most severe mTSS cases can cause organ damage, disfigurement, and even death. While tampon manufacturers have misled consumers into believing mTSS is rare, it is actually quite prevalent. As a result of this misconception, this serious, life-threatening women’s health issue has unfortunately been pushed aside and overlooked for the past forty years.
After her daughter, Madalyn, passed away at nineteen due to mTSS in 2017, Dawn Massabni was compelled to make a change. In October 2018, she founded the Don’t Shock Me foundation in honor of her daughter, Maddy. Led by Massabni and her son George, who serves as Vice President, there are eleven members who comprise the organization’s Board of Directors. The first mTSS foundation in the world, Don’t Shock Me advocates for women’s health and spreads awareness about the dangers of menstrual toxic shock. Through this organization, Massabni has met numerous victims of mTSS. According to Massabni, “It’s everywhere—it’s just not talked about. We need to start talking about it.” While tampons are a convenience for women, more education is needed regarding their correct usage and potential dangers. When it comes to mTSS, time is critical. If you can recognize the signs and symptoms of mTSS, you can catch it before it causes serious illness.
Since its establishment, Don’t Shock Me has worked tirelessly to raise awareness about the risks associated with tampon usage and the dangers of mTSS. When the FDA proved to be unresponsive towards addressing this issue, Massabni resolved to take action herself, developing three bills for New Jersey. The first bill, Madalyn’s Law A1961/S1464, requires age-appropriate mTSS education in health classes in grades five through twelve, as well as mandates mTSS warning posters be posted in public restrooms. The second, Medical Questions Bill A5746, requires doctors to ask women when they last used a tampon and if any symptoms have appeared since using that tampon, which would assist doctors in identifying the existence of a mTSS diagnosis. The third, Packaging Bill A5639, requires that tampon manufacturers redesign the packaging of their product to include the tampon’s ingredients clearly visi- ble on the box, a bold warning of mTSS on the front of the box, and legible print listing the signs and symptoms on the inside flap of the box. Furthermore, Massabni is working on a federal bill which includes everything in the NJ bills, as well as contains several additional provisions. For example, the federal bill also mandates that mTSS be given a dedicated diagnostic code in order to keep accurate statistics of this disease. This would allow the healthcare sys- tem to track mTSS cases, identify the age groups most affected, and determine which tampon products are creating these cases. Although the Covid-19 pandemic has caused some delays, Massabni hopes to see progress on the bills resume in the coming months.
Along with the bills, Don’t Shock Me has developed mTSS informational posters and pamphlets, and has held two successful fundraisers. Massabni has presented at universities, medical schools, and doctor’s conferences, emphasizing the importance of physician re-education on mTSS so they can accu- rately identify it and prevent misdiagnoses. Additionally, Don’t Shock Me has created a documentary sharing Maddy’s story. Extremely touching and emotional, as well as educational, the documentary informs audiences about the symptoms and dangers of mTSS, as well as addresses the need for more mTSS education and stricter regulations for tampon manufacturers. On the foundation’s website, Massabni also writes monthly articles detailing new, up- to-date research about mTSS so that the public can remain properly informed. Moreover, the state of New Jersey and several towns, including Rumson, Fair Haven, and Red Bank, have designated March 30th, the day Maddy passed away, as Menstrual Toxic Shock Awareness Day.
There are many ways people can support Don’t Shock Me. For instance, the public can contact their respective legislative representatives and demonstrate support for the bills. In addition, community members can volunteer at fundraising events, or donate directly to the foundation. Massabni also urges people who have contracted mTSS to report their cases, which would allow the government to more efficiently keep track of case rates. Most importantly, Massabni encourages the public to spread awareness about mTSS. The best thing everyone can do is educate themselves about the dangers of mTSS, as well as others, because by doing so you are indirectly saving another person’s life. “The more people who know, the more people are saved,” she asserts.
Ultimately, Massabni wants laws and policies that stand up for women. Massabni wants women to be safe and declares: “My life’s work is to prevent another precious life lost to mTSS.” So far, she is succeeding, as Maddy’s message has already saved countless lives. Through Don’t Shock Me, Maddy’s memory and legacy live on.
To learn more about mTSS and Don’t Shock Me, contact Dawn Massabni (firstname.lastname@example.org) or visit https://www.dontshockme.org/