Global Mesh Awareness Day Twitter Party, Sunday, May 1
Mesh Medical Device News Desk, April 29, 2016 ~ The women behind the Facebook group, Mesh Awareness, will be Tweeting all day and night Sunday, May 1 and will be joined by mesh awareness groups across the globe.
That would include women in Scotland, the UK and The Netherlands, all of which have very active social media group surrounding the mesh complication issue.
The event will last all day.
Dora De Wilde of The Netherlands designed the poster. Global Mesh Awareness is growing in numbers and began loosely about two years ago. It is growing as mesh injuries are growing.
The hash tag is #MeshAwareness. Social media abounds with mesh-injured women and many find unity in talking and offering support to each other online. Many are relieved to find out they are not alone.
Hernia mesh is included among polypropylene mesh injuries. There are now more than 90,000 product liability cases concerning pelvic mesh filed in federal court in West Virginia as well as thousands filed in courts around the country. Internationally, mesh injury lawsuits have been filed in the UK, Scotland, The Netherlands, Israel, Australia, Belgium, Canada, England, Israel, Italy, the Netherlands, and Venezuela seeking damages.
Major mesh manufacturers include Johnson & Johnson/Ethicon, C.R. Bard, Boston Scientific, American Medical Systems, Cook Medical, Covidien and Neomedic. Women report chronic infections, pain, mesh erosion, mesh shrinkage, and many are disabled and unable to leave their beds.
Janis Urban writes about Mesh Awareness Day, “Along with our Posts and Tweets to bring awareness to the Risks of Mesh. Let us Share Pictures, Memories both past and now. It’s not all bad… Good Things, Blessings that still remain in our Lives. I’m grateful for the love and support you all give to me and sharing your joys of family activities always lift me up! Let’s spend the day be grateful and happy! “
Urban (@janurban12) is a lead participant along with Mesh Awareness Movement (@MeshAwareness) and Tammy Jackson (@TammyJa54001341). Thousands of women are online with Facebook pages including Mesh Problems, Links on Mesh, Deb Meshme not, Scottish Mesh Survivors, Meshed-Up, among others.
Urban says if you don’t know how to tweet, go into the pages of Mesh News Desk or find a mesh-related story and hit the little Twitter bird, that will send it to Twitter. You don’t even need an account but signing up is also very simple.
(Here’s one Pelvic Mesh 101: The Basics http://www.meshmedicaldevicenewsdesk.com/mesh-101-basics/ (find the twitter bird at the bottom of the story); or this one Reporters Resource on Covering Mesh Issues, (again look at bottom of story for the little blue Twitter bird, http://www.meshmedicaldevicenewsdesk.com/reporters-resource-on-covering-mesh-issues/)
Friday Twitter Parties
So far the group has sent out about 1,500 tweets, every Friday night between 8 pm and 11 pm EST. Many of them are 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.”
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:
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.
How do you use Twitter?
For those uninitiated to Twitter, a # is a Hashtag and it 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.
Social media abounds with clever posters created by the mesh injured community. Check out Twitter and Facebook and visit the above sites.