Women injured by pelvic mesh implants have found a new way to fight back. This is the shot heard ‘round the world, mesh community hits social media! The Mesh Awareness Movement (MAM) currently hosts parties every Friday night on Twitter, as well as keeping an active Facebook page.
Women injured by pelvic mesh implants have found a new way to fight back. This is the shot heard ‘round the world, mesh community hits social media! The Mesh Awareness Movement (MAM) currently hosts parties every Friday night on Twitter, as well as keeping an active Facebook page.
The parties, alas, are not of the celebratory type. They are comprised of scores of victims, women whose lives have been painfully altered, gathering to raise awareness of yet another medical device that is ruining women’s lives. The Twitter parties are held every Friday night from 8PM to 11PM EST and are attended not just by mesh victims, but also by women who have been injured by other medical implants the FDA has deemed “safe.”
One of the participants, Janis Urban, whom I had the pleasure of speaking with, said, “Our tweets bring awareness to warn others who may be considering a mesh implant. They need to know the risks of mesh.” She knows those risks all too well, having been injured by one of Ethicon’s devices. Ethicon is a subsidiary of Johnson & Johnson (J&J).
Mrs. Urban (@janurban12 on Twitter) is one of the lead participants of the Friday night Twitter parties, along with Tammy Jackson (@TammyJa54001341) and the Mesh Awareness Movement (@MeshAwareness). To date, there have been about 1,500 tweets sent, many with J&J, the largest mesh producer, as the focus.
And, Johnson & Johnson is paying attention.
Tammy Jackson wrote directly to Johnson & Johnson at @JNJcares and #JNJNews.
J&J’s reply:
“Thanks for alerting us to these Tweets. We’ll continue to monitor the situation, and we appreciate you letting us know. Sincerely, The Johnson & Johnson Team.”
The Twitter parties started on March 11, focusing on J&J for the first two weeks, using the hashtags:
- #JNJHurtWomen,
- #JNJhurtsforprofit, and
- #FDA.
Mrs. Urban posts several tweets and Facebook updates on the MAM’s page daily, encouraging other members to share them.
“It couldn’t be any easier for them to Tweet,” she says. “All they need to do is click on the tweet posted and if they are a member of Twitter it takes them to their Twitter page and they sign in and can retweet or add hashtags-addresses.”
Others have noticed, too. Joleen Chambers, a patient advocate, said the idea was “brilliant” as Twitter provides a level playing field for those injured. Anyone can tweet a company, a group or an individual and the Twitterverse can see it.
In fact, that’s why it’s the “shot heard ‘round the world.” Through the power of social media, injured women and their supporters from around the globe can interact in a heartbeat. Here are just a handful of the groups out there:
- Scottish Mesh Survivors #ScottishMeshSurvivors
- Sling the Mesh @MeshCampaign,
- Mesh Me Not,
- Mesh Problems,
- MAM,
- Mesh News Desk,
- Peggy Day Writes, and
- Groups in New Zealand, Australia.
Mrs. Urban has plans to reach out to other groups of women injured by FDA-approved devices, such as Essure and power morcellators.
As is the case with many of the E-Sisters (women injured by Essure), mesh victims are stepping out into the open to put a human face on what the FDA and device manufacturers see only as statistics.
Mrs. Urban put it well when she said, “You got to put a face on it. We are as invisible as the mesh that’s been implanted in our body. No more suffering in silence. You’ve seen the inflammation on the outside, what is going on in the inside?”
Hashtags used to spread the mesh word have been:
- #Pain,
- #Autoimmune,
- #Toxic,
- #Untested,
- #LivesMatter
- #FDA,
- #Congress,
- #Media,
- #Regulations,
- #Doctors,
- #Polypropylene,
- #Justice,
- #PelvicMesh,
- #MeshInjury,
- #HerniaMesh,
- #LivesRuined,
- #MedicalDevice,
- #HealthcareReform,
- #HSM, (healthcare social media),
- #healthhacks,
- #healthfit,
- #ehr (electronic health records),
- #patient safety,
- #medicalresearch, and the list goes on.
MAM welcomes all injured women and their supporters to join the Friday night Twitter parties, as well as to tweet and post to Facebook on a daily basis.
Learn more at the MAM Facebook page.
Click on the “Source” link below if you’re interested in a great Twitter tutorial for those new to the Twitterverse.
Source:
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