March 25, 2016 ~
The Mesh Awareness Movement has taken to Twitter and J&J is watching!
A growing number of women are joining in a party every Friday night, but there is nothing to celebrate.
The mesh community parties are held online on Twitter and women injured by pelvic mesh and other implants cleared by the U.S. Food and Drug Administration are invited.
Every Friday night from 8-11 PM EST!
Urban (@janurban12) is a lead participant along with Mesh Awareness Movement (@MeshAwareness) and Tammy Jackson (@TammyJa54001341).
So far the group has sent out about 1,500 tweets, many of them directed at J&J, the largest manufacturer of pelvic mesh.
The parties began on March 11 and the focus of the Tweets for two weeks was on J&J - #JNJHurtWomen, #JNJhurtsforprofit, @MeshAwareness, #FDA.
Jackson wrote directly to Johnson & Johnson at @JNJcares and #JNJNews.
Don’t think J&J didn’t notice, in fact, a tweet claiming to be The Johnson & Johnson Team even replied to the latest!
The reply was:
“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.”
Urban says she posts a dozen Tweets daily with various Messages on the MAM's Facebook Home /Discussion Page. She will ask members to Tweet and share them on Twitter & Facebook.
"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."
Patient advocate Joleen Chambers (@JjrkCh) calls the approach “brilliant,” because Twitter levels the playing
field. An individual can Tweet directly to a company or an individual and the world can see.
TAKING IT GLOBAL
Twitter allows you to talk directly to anyone crossing continents and oceans. The Twitter campaign of MAM includes support messages for support groups of people injured by pelvic mesh around the world including:
Scottish Mesh Survivors
Sling the Mesh @MeshCampaign, #ScottishMeshSurvovirs, and groups in New Zealand, Australia. In the U.S. there's been a growing population of the mesh injured community taking to social media including Mesh Me Not, Mesh Problems, MAM, Mesh News Desk, Peggy Day Writes. They may have websites, or blogs but they are unified by a common thread- injury from a polypropylene implant.
The participation among mesh injured has been good, says Janis, who plans to reach out to other support groups such as @EssureProblems and @PowerMorcellator, medical devices also allowed onto the market by the FDA that are injuring women.
Is Urban, who has a lawsuit filed against J&J, concerned about being in the public arena? Not at all. She is tired of being quiet.
"You got to put a face on it. We are as invisible as the mesh that’s been implanted in our body," she says. "No more suffering in silence," Urban shows a shot of her body swollen, compared to the petite woman she used to be before mesh.
She asks, "You’ve seen the inflammation on the outside, what is going on in the inside?"
NEW TO TWITTER?
For those uninitiated to Twitter a # is a Hashtag opens up a general topic of interest. Put in a # and pull up a general topic that follows the hashtag, also known as a number sign. For example #toxicmesh, or #FDA.
The @ sign is basically used to call out user names on Twitter. @JNJcares will send a Tweet directly to the company. Its also how you are identified @meshdevicenews, or @janurban
Remember you are limited to 140 characters, short and sweet!
Hashtags used to spread the mesh word have been: #Pain, #Autoimmune, #Toxic, #Untested, #Lives Matter #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, #medical research, and the list goes on.
Getting started with Twitter
Posting a Tweet
Signing up with Twitter