Share your story on StoryCorps
The Bleeding Edge weaves together stories from people whose lives have been irrevocably harmed by dangerous medical devices, but those we feature are just the tip of the iceberg. We now invite you to share your story of medical device harm on StoryCorps.
StoryCorps is an online archive of personal stories preserved in order to build connections and create a more just and compassionate world. By sharing your story, you can help bring together a community of those harmed by devices, as well as create a repository of testimony about device harm to be archived in the Library of Congress and used by future journalists and researchers.
Join StoryCorps and The Bleeding Edge Community
Go to The Bleeding Edge Documentary Community’s Registration page to sign up for your free StoryCorps account. You will automatically join our community by using this link. Alternately, you can download the StoryCorps app from the App Store to create an account and use the community code “TBEdoc” to be automatically added. This is the account that you will use to record your story and find others sharing their stories.
If you already have an account, search The Bleeding Edge Documentary Community within Communities on the Archive website, or type in “TBEdoc” in the community code option on your mobile profile, and click join.
You may want to tell your story on your own, or with a partner. You can write an outline to follow, or choose questions to answer. Example questions can help you write your outline and can be found in the community online, but feel free to make up your own as well! Find a place where you can be relaxed and comfortable, and won’t be interrupted.
Tell Your Story
For recording via the mobile app, click the + sign in the top right corner and follow the prompts to begin recording. If you’d like to record your story on something other than your phone, you can upload it via the website by clicking your profile icon and going to “Add A New Interview.”
You can record for up to 45 minutes, so make sure you can tell your whole story in that amount of time! If you choose to do an interview, let the conversation move along naturally. Listen to your partner and let your questions guide the discussion, not control it. Feel free to ask follow up questions—they may reveal something new and unexpected.
Photo, Title and Keyword
Once you finish recording on the app, you will be prompted to take a picture of yourself or upload one, and add a title, description and keyword before uploading. Titles should be descriptive and unique; some people use a quote from their story.
Make sure you tag “Bleeding Edge Doc” as a keyword, and feel free to tag your story with other relevant keywords, like Essure, Mesh, Bayer, Medical Devices, etc. You can also add organizations you’re involved with (e.g., Essure Problems) and places to the description.
Before uploading, be sure to share your story with The Bleeding Edge Documentary Community by selecting “edit,” then choosing The Bleeding Edge Documentary Community in the “Share with a Community” Section on the app or the “Add your interview to a Community” section on the website.
Share and Archive Your Story
You will have the option to share your story on the StoryCorps website and have it archived at the Library of Congress. You are also able to keep your story private and share it directly with friends and family. Your story will only be searchable if you share it with StoryCorps.
Search for Other Stories
To find stories uploaded to our community, go to The Bleeding Edge Documentary Community through the search bar on the Communities tab or visit the StoryCorps Archive website and type “Bleeding Edge Doc” in the search box. You can further filter the stories by date, organization and place on the left side of your screen.
- What device do you have?
- What was your life like before getting this device?
- What led you to get the medical device?
- What research, if any, did you do before getting the device or procedure?
- What did your doctor say about this device?
- How did getting this device affect your life?
- How has this affected your family?
- What are some things you wish you knew before getting the device?
- What about your experience would someone be shocked to hear?
- What advice do you wish to pay forward for someone considering a medical device?
- What changes do you hope will happen within this industry?
Patient Safety Precautions
Medical errors may occur in different health care settings, and those that happen in hospitals can have serious consequences. Learn about these ways to prevent adverse events from happening.
- Research any device that will be used on or in you. New is not necessarily better.
- Get a second opinion for any risky or expensive procedure.
- Ask your surgeon how many procedures they have performed.
- Go to openpaymentsdata.cms.gov to see if your doctor
has been paid by a medical device company.
- Have a friend or family member be your advocate while you’re in the hospital.