CALL FOR VIDEOS - YOUTH AND CAREGIVERS!

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 wetransfer.com to info@lupusfoundationjamaica.org

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):  

YOUTH

  • 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?

PARENT/CAREGIVER

  • 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!


Miss Jamaica World Khalia Hall to join with Government and Medical Societies to support World Lupus Day Observance


Khalia Hall, the reigning Miss Jamaica World, is demonstrating the philosophy of Beauty with a Purpose as she lends her time and influence to the cause of Lupus Awareness.

Miss Jamaica World is one of several well-known personalities that have endorsed the efforts of the Foundation over the years to promote awareness about Lupus.  “I feel grateful to be able to use my platform as Miss Jamaica World to help the Lupus Foundation of Jamaica to raise awareness around this debilitating disease.” 

On May 10, Lupus Foundation of Jamaica will be joining in with lupus groups across the world in observance of  World Lupus Day 2022 under their own theme LUPUS LEVEL UP: Make Lupus Visible.  According to Dr Desiree Tulloch-Reid, President, the campaign will have an Island wide reach through media interviews and promotions, poster displays, a social media campaign and Awareness walks dubbed “Make Strides for Lupus” across the Island and will culminate in a World Lupus Day Ceremony and mini-health fair at Emancipation Park, New Kingston, on May 10, 2022.  “We will be engaging all our members, supporters, media partners, Government, community organisations, the public at large and all our online and social media to increase awareness of lupus, specifically this year emphasising the impact of lupus on the body’s organs.”  

Ms Hall will be supporting the LUPUS LEVEL Up campaign by a video endorsement for social media and being photographed in the purple T-shirt bearing the Campaign theme.  She will also attend the Foundation’s key event, a free mini-health fair at Emancipation Park, and take part in an official Opening Ceremony at 12:00 pm in tandem with the  Minister of State in the Ministry of Health & Wellness, Hon Juliette Cuthbert-Flynn who will declare the event open.

Also present at the free event at Emacipation Park will be representatives of several health Professional Associations including Medical Association of Jamaica, Dermatology Association of Jamica, Pharmaceutical Society of Jamaica and Jamaica Physiotherapy Association as well as Mandeville Regional Hospital Nephrology Unit, who will interact with the public and provide health talks and demonstrations.  National Health Fund will provide free health screening in tandem with the Diabetes Association of Jamaica.  A live broadcast on Riddim FM 102 with host Vernon Derby will also feature conversations with health professionals, volunteers and persons living with Lupus, as well as reports from participants in awareness walks and other activities across the Island.

The public is invited to wear purple on Tuesday May 10 in solidarity, to participate in local activities and make donations to the Foundation towards support services for persons with Lupus. Further information is available at the Foundation’s website www.lupusfoundationjamaica.org or by contacting 8767548458.


7 Barbados Avenue
Kingston 5, Jamaica, W.I.
876-754-8458

Helpline
876-778-3892 (Voice/Text/Whatsapp)

Email: info@lupusfoundationjamaica.org


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