Add Your Voice

If you could tell health care providers something important about lupus what would you say? In honor of Lupus Awareness Month, we want you to tell the stories that medical/health professionals need to hear.

 

What:

  • Tell your story on video. Create a 1-2 minute YouTube video telling us something important about caring for people with lupus. (See a list of ideas below)
  • Email us a link to your YouTube video at LupusStoryBank@rheumatology.org
  • Beginning on World Lupus Day, May 10, 2011, we will feature some of the submitted videos on The Lupus Story Book Page located on our website.  

Why:

Our goal is to support medical professionals as they learn how to better care for people with lupus. Help us reach our goal by sharing what you’ve learned and experienced because often the best and most memorable lessons come from real life.

 

Who:

We want to hear the voices of:

  • Patients
  • Medical and health professionals
  • Family members
  • Caregivers
  • Employers
  • Advocates
  • Allies
  • And others in the lupus community
 

How:

Upload and share your video using YouTube. New to YouTube? Use the guides below to learn how to upload and share your videos.

To learn how to upload a YouTube video:

YouTube 101: How to Upload

To learn how to share a YouTube video:

YouTube 101: Sharing Videos

Once submitted, we reserve the right to feature your video on our website and/or use it in our educational materials for medical and health professionals to help improve the diagnosis and treatment of people with lupus.

By submitting your video, you are agreeing to the following:

  • The individual submitting the video must be 18 years or older in order to participate.
  • No videos will be included in the Lupus Initiative® Story Bank unless permission forms have been received and contact information can be verified.

Please download and complete the consent form and return it to the Lupus Initiative® Story Bank via fax (404-633-1870) or email us at LupusStoryBank@rheumatology.org.

 

Privacy:

The personal information we collect directly from you as part of The Lupus Initiative® Story Bank will ONLY be used to verify the person submitting and ensure we have received all required permission forms.

The Lupus Initiative will never sell or distribute identifying information collected as part of The Story Bank for any reason, except perhaps by “favoriting” your video itself in YouTube and/or incorporating part or all of it into educational materials that we distribute.

 

Story Bank Ideas:

The questions below may help you determine what you might like to add to our story bank:

  • Do you have a good relationship with your physician?
    • What makes it good/how did you work together to create it?
  • Have you had difficulty communicating with your physician?
    • Are there language barriers?
  • How have you been an ally for a person with lupus?
  • Do you feel competent in your understanding of the importance of your patients’ cultural identity in disease management?
  • In what ways do you feel empowered by helping your doctor manage your lupus?
  • What have you learned in working with patients and their families that other providers need to know?
  • Describe a pivotal moment in your lupus journey (as a patient, caregiver, medical professional, etc?)
  • What has helped you coordinate information between the doctors/nurses who treat your lupus?
  • How has lupus affected your parenting?
    • What is significant about parenting a child with lupus?
    • If you have lupus, has it changed how you interact with your child/children?
  • If you were diagnosed as a young person, what should your provider know about how lupus impacted your transition to adulthood?
  • Has race or ethnicity been a factor in your lupus journey?
  • Has lupus impacted your self-esteem or self-image?
    • Explain why it is important for your provider to understand that.
  • What has been the most positive part of your lupus experience?
    • Did you start/join a support group?
    • Have you realized an inner strength?

Video selection criteria includes but is not limited to creativity, quality of video, clarity of audio and number of videos on similar topic.