Free Case Evaluation
Connect
With Us

Mesh Community Taking it Social, Global

Janis Urban

Janis Urban

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!

“Our Messages Tweets bring awareness to warn others who may being considering a mesh implant. They need to know the risks of mesh,” says Janis Urban of Ohio, who was injured by an implant made by Ethicon, a division of Johnson & Johnson (J&J).

twitter icon

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.

J&J is monitoring tweetsThe 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

MAM Tweets

MAM Tweets

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

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.

janiskurban on twitter“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.

party invitesMesh Awareness welcomes everyone to join us and become a member and start bringing awareness to the world on Twitter every Friday 8-11pm EST and Daily!

 

 

LEARN MORE:

MAM Facebook
https://www.facebook.com/groups/MeshAwarenessMovement/

Public Awareness Director MAM, Janis Urban,  janishietala@yahoo.com  Lisa Mason:meshawarenessmovement@gmail.com  .
MAM (330) 418-7408  @JanisUrban12 Twitter

Twitter Tutorial:

What is a hashtag?
http://techforluddites.com/the-twitter-hashtag-what-is-it-and-how-do-you-use-it/

Getting started with Twitter
https://support.twitter.com/articles/215585

Twitter FAQs
https://support.twitter.com/articles/13920

Posting a Tweet
https://support.twitter.com/articles/15367

Signing up with Twitter
https://support.twitter.com/articles/100990

 

 

21 Comments

  1. Janis Urban says:

    Jane, Lisa, Tammy & I would like to Thank you for this wonderful article about the Mesh Awareness Movement Twitter Parties and Awareness Programs. As MAM’s PR/Awareness Program Director I invite everyone to join Mesh Awareness. We have many plans for the upcoming year and we could use all the support anyone has time to give. See you All in MAM and on Twitter Daily & Friday’s. Thanks again Jane for All you do to bring awareness and information to the mesh injured!

    • Connie says:

      CONGRADULATIONS Janis !! I’m so proud of you & Tammy for teaching me how to Twitter !! This story was GREAT girl friend !!! ????????????????

  2. Tammy S Jackson says:

    Jane, Thank you, for this article. We are hoping to bring Awareness. Janis is working so hard. She makes tweeting easy for us on MAM. Ladies, please join Twitter and join us in the Mesh Awareness Movement, Tweeter Parties.

  3. I encourage all implant-harmed patients to use Twitter to help inform the general public about this issue and to prompt change in public policy. As it stands, the FDA is not PREVENTING the harm and the device industry has legislated protections that interfere with access to justice for those who are devastatingly harmed by devices that are not biocompatible, are poorly designed or are implanted off-label-without patient-outcome justification.

  4. Roseann Knowles says:

    The mesh implant came loose and traveled through the vaginal wall into my groin where it embedded in the muscles and nerves of my left leg. I was crippled by the inability to use that leg and by the horrific pain. My doctor never told me he used mesh and only said that he did not use mesh on my pelvic floor. He also gave me a letter that said the only thing he could offer was pain management. I lost my job, my ability to take care of my family, my sex life, and felt that life was over for me. Thank God for a referral to a doctor who got my records saw that I had a mesh implant put on my bladder and scheduled for it to be taken out. What he saw caused for a very long surgery and recovery. It took over 4 hours to remove as much as possible.
    Removal did give me the use of my leg but still very unstable with use. Bladder pain is always a problem and infections and having to use a catheter are part of my life. No woman should have to endure the situation that a mesh implant has done to me. I want to be part of advocating for women and expose the total disregard for women and the big profits made by companies at the expense of our lives. I refer to my life as the before and after mesh implant.

    • Keli says:

      Roseann, while reading all the suffering you have indured, to due the mesh implant, like myself having to suffer with the pain both emotionally and physically, My heart hurts for anyone who has to indure this type of suffering, and not knowing what future disabilities will occur, due to nerve damage, amongst other damages done . Keep your head up, and lots prayers going out.

  5. Barbara Pezdirc says:

    Just reading everyone comment makes me no I am not in this by myself

    • Jane Akre says:

      Unfortunately, there are many others around the world who are in your boat. I’m sorry.

    • Tammy S Jackson says:

      Your not alone Mesh Sister, join Facebook, lots of support groups. Mesh Awareness Movement, Mesh Problems, etc. God bless

  6. Janis Urban says:

    A Women’s Comment for Discussion Today? Twitter brought her to our Page! My Doctor Said it’s the New Kind of Mesh he wants to Implant in Me? Is there a New Kind Of Mesh? Does anyone here have an answer to this ?’s. I know most of you do? But how does she find you to get this information?
    I sat in Judge Goodwin’s Court Room Last June for his closing remarks at a Status Conference for the MDL Plaintiff’s and Defense Lawyers. He spoke directly to us mesh injured that we should be careful and not believe everything we read on FB & Social Media. This was all he said about the subject! Women are still being Implanted with these devices everyday! Why?

  7. Connie says:

    Jane as usual this is a great story !! Thank you girls for helping me so much . Jane for two years almost every night I check you out. You and Aaron have been my life line to knowledge of the mesh & what’s going on. It was so simple type in “update on transvaginal mesh “. It took me right go you every time. I found the wonderful ladies that have been a blessing to me . The groups are as if you looking in the mirror at yourself in almost ever lady . I love , respect & appreciate all you have done for me. I love the article & I look forward to seeing more . I’ll scream It from the highest mountain & the lowest valley that mesh ruins lives . I’m a fighter, a go getter , fight for the rights of others kind a person !!! God Uses People To Help People !! What an honor to be used of God in such a way . You girls are literally angels being used by Our Father to help others !!

  8. Lynne Ruth Dwyer says:

    I saw the lawyer ads over the years. I probably began noticing them in 2012 when I had my first robotic prolapse repair. But I thought “thank god my doctor didn’t say anything about mess. Just a hysterectomy, rectocele and bladder lift”. Yes. Lift. That’s all. No mess. Just lift. Second surgery 2013 – rectopexy, rectocele. Doctor said “my mesh is the safe mess. No problem”. So, I felt safe. Rule # 1. Never feel too safe with your surgeon. Surgery put in polyprolene. Surgery two couldn’t take out the poly because it was too dangerous. However, he thought it ok to put in more mesh – safe Gore Tex. Now, I have pelvic, rectal and urethral pain. Strange auto immune symptoms. Even my primary said “go for it”. I just woke up. Those lawyers were speaking to me. I just didn’t know it. The general media has so clamped down on informing the public it’s big business at its best. I wish I had understood before they cut me open and changed my life forever. Not only was I not informed of the risks – the surgeon did all he could to sway me into the surgery whenever I expressed doubt or concern. Get would just pack on another lie or pseudo empathic statement intended to get me into the OR. I was used as a teaching tool for his subordinate colleague. They got a little extra cutting time in with this highly conflicted surgery. Just to see if they could do it. An exercise in testing their skill. Just don’t tell the patient about all those hurt women and their lawsuits. “WE USE THE GOOD MESH”!

    • Jane Akre says:

      You are so right… How dare they say the “good mesh” as if they know what that is?

    • Still Standing says:

      Have you retained an attorney. Although you may be outside your states statute of limitations for the actual surgery, for litigation purposes it is when you first became aware that the mesh was causing your problems. It is important to make that distinction. I have posted info about managing post mesh pain under multiple other articles. If you are interested I can repost. It is absolutely imperative to learn to relax your pelvic floor and find ways to do this throughout your day. What is your physician recommending?

  9. Lynne Ruth Dwyer says:

    Thank you for the advice. Once I read and forwarded the op reports the lawyer took the case. Good old Boston Scientific. I hope it wasn’t off the Chinese Menu. I really have a difficult time processing why, any fool dr. would do this surgery in 2012 after the FDA reports. I can see the buggers running under a leaf to hide with the excuse that the manufacturer didn’t inform them of the risks. But, surely in 2012, 13, 14, 15 and 2016 this excuse cannot by any reasonable means be accepted – how then, do they rationalize continuing to harm. The level of deniel approaches psychotic. My physician wants me to do pelvic floor therapy both rectal and vaginal. I can’t find the trust inside of me to let them touch me. Psychologically, I’m responding as though I had been physically molested. It sounds superficial to say mesh was put in. In reality, they injured, cut and polluted with toxic non biodegradable waste, that shouldn’t even go into a land fill, the most intimate parts of my body. Rendering me a person, who will never be able to be intimate, with a partner again in my life. It’s difficult at this time to allow them access to that body in order to help teach me how to relax. They have lost all my trust.

    • Janis Urban says:

      Lynne Ruth Dwyer Your story is why I have chosen to use my voice to tell the world the risks of these mesh medical bladder slings. I sincerely hope you can find your way back to wellness from these devastating injuries. Wishing you peace and comfort.

      • Nameless says:

        Thank you for the good wishes. I have no idea which path is right for me at the moment. Just the obsessing about having to do something to fix this takes up so much energy.

    • Still Standing says:

      Dear Lynne..you HAVE been psychologically and emotionally violated and it is perfectly normal to have trust issues. We have been violated by these products. However,it is important for you to move past what was done to you and focus on what you need to do to improve your quality of life. This is not easy and it in no way means you must forgive or forget. However, it requires taking a broader perspective of your SELF and recognizing that you are worthy even now of getting better. It is hard to recognize this when we are victims.

      I want to tell you my experience with pelvic floor therapy. I consider it one of the key treatments in my getting better. I had a very positive experience with her. My pelvic floor had become so hypertonic after the mesh ( I had my entire vaginal wall lined with transvaginal mesh,) that it wouldnt even register on the biofeedback program. She was a gentle therapist and a great teacher, in fact, I still have the notebook she added to at each visit and refer to it often. She was able to identify trigger points and relax those. She and my physician communicated well. It is validated best practice for treating pelvic floor dysfunction. In fact, my doctor now requires pelvic floor therapy before any surgery ( I have had eight major mesh-related surgeries). Hypertonic pelvic muscles generate a great amount of pain and they can cause cascading issues with the bladder and bowels. All of these functions are so interconnected. Each symptom needs to be treated in order to get better. Please dont discount this treatment without giving it serious consideration. There is a wonderful book I found after mesh and before I got referred to my treating physician. It is called “Ending Female Pain” by Isa Herrerra, available on Amazon. She is a pelvic floor physical therapist and has an entire practice devoted to pelvic pain in Manhattan. It was such a great source of information about pelvic pain. My pelvic floor therapist advised me about different suggestions in the book in the context of mesh. For me, knowledge is power and I have been relentless in learning about the pelvic floor and pain. I will be glad to answer any other questions you might have about PT. i am hopeful you will at least keep this option on the table. Just give it some time. It took a while and, most important, Imhad tomdo the work at home. If you go, yet dont do the release exercises at home, you will not have optimal outcomes.

  10. Sandra A says:

    What a nice surprise to see the warrior, Janis, one of the first to take me in and guide or just listen. I thank you. A lady wrote on this site about her leg and I’m wondering if she would contact me. After having a very aggressive test for mesh – brutal to include rectal where I had just had surgery to repair the mess the first surgeon made – I have groin pain, my ankle swollen, foot, and shin hurt – this started after the test to see if I have mesh – well, yes, on my bladder; successful removal of hernia mesh and rectal mesh, however, things are acting up in area of TVTO – poking, but the groin/leg pain concerns me. If you don’t mind, Roseann Knowles, perhaps you could shed some light on my groin pain and leg pain along with so many places, walking is a luxury these days. Thanks again, Janis and, of course, Jane and Bruce Rosenberg – so many who have paved the way. Slowly but surely the stuff is coming out, but, had to reach bottom first. Go get ’em Janis.

Post a Comment

Your email is never published nor shared. Required fields are marked *

*
*

© 2016 - 2017 Mesh Newsdesk. All rights reserved.
This is a Sundown Legal Marketing law firm website.