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22 Oct 2021 10:12 AM | Anonymous

For our Symposium this year we are focusing on Children and Youth with Lupus and by extension their families. 

If you are a youth with lupus, experienced lupus as a youth, or are a parent or caregiver, we invite you to submit a short video recording just sharing your experience or perspective.  This will help inform medical persons and others in attendance who are interested in helping young persons with lupus do better.

Please send submissions by Wed Oct 27 if possible, using to

Here are some tips you can use for a great video:

  • For best results mount the camera/device so it is stationary or have another person film you. 
  • If a phone is used, it should be held horizontally for a landscape view. 
  • Make sure your light source (eg a bright window) is in front of and not behind you.  

Here are some starter questions that might help guide you (suggestions only):  


  • Introduce yourself
  • How old are you now?
  • How old were you when you were diagnosed with lupus?
  • Do you recall what led to you being diagnosed with lupus?
  • Describe what that experience was like.
  • Had you ever heard of lupus before?
  • How are you doing now?
  • What has it been like for you living with lupus?
  • What are the things that have been difficult for you?
  • Do you get overwhelmed?
  • What has been helpful for you?
  • What else would be helpful for you, at home, at school or otherwise, in dealing with lupus?
  • Do you know anyone else with lupus?


  • Introduce yourself
  • What is your connection to a child/ youth with lupus?  
  • When was he/she diagnosed and at what age ?
  • What led to the diagnosis?
  • What was it like hearing that news?
  • Had you ever heard of lupus before?
  • How is he/she doing now?
  • What has the journey been like?
  • what has been difficult for him/her, or for the family?
  • What has been helpful?
  • What else do you think would be helpful for your child, or for you as a family
  • Do you know any other families coping with lupus?
  • What kind of support would you want to see for children/parents/caregivers impacted by lupus?

Note that not all submissions may be used for the Symposium, also that your submission may be edited and may be used for other projects to promote lupus awareness.

Thanks for your help in the fight against lupus!

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