News

For 2021 Lupus Foundation of Jamaica (LFJ)’s month-long annual campaign placed a spotlight on Children and Youth with Lupus.  With the average age of onset for lupus of 22 years and up to 20% of persons being diagnosed as children, the LFJ sought to highlight and raise awareness of this special group among the general public and youth in particular.

Annual Print and Poster Campaign:

Once again, arresting images and messaging on Posters and other print items served to educate and promote awareness at Hospitals, Clinics, Doctors’ Offices, Campuses, Libraries and other high traffic locations and included educational posters about lupus, hightlighting activities of the month and how persons could "get involved", as well as educational brochures for distribution.

Social Media Campaign:  In keeping with the Youth focus, the LFJ enjoyed continued growth in Social Media presence on You Tube, Social Media platforms Facebook, Instagram, Youtube, Twitter, LinkedInand even Tik Tok, with a reach of over 30,000 and a growing number of followers.  Thanks to those who liked, shared and followed to help get the word out about lupus and LFJ.

Media Campaign: Thannks to a range of Media Partners, LFJ Youth spokespersons such as young poet and musical artiste Kianna Jackson, youth board member Umeko Chin and Communications Team member Georgia Johnson, supported by LFJ health professionals were able to share information, Personal stories and even artistic features such as poems and videos to engage all ages through electronic media of radio, television and online platforms. These included several programmes specially targeted for Youth such as Talk Up Yout', Campus Connection and UWI campus radio station Newstalk93FM,. These combined with 11writtend pieces published in print and online, highlighting information about lupus, personal stories and activities of the month, to reach an estimated audience of 700,000 to raise lupus awareness.

Ask The Expert Live: The LFJ's popular online Q & A programme marked it's 1 year anniversary with the first Ask The Expert Live - Youth Edition sponsored by Barita Investments Ltd, that featured special guest Paediatric Nephrologist Dr Rebecca Thomas-Chen hosted by LFJ Rheumatologist Dr Taneisha McGhie-Phillips, answering questions from youth, parents and others with over 100 persons joining in live steam on Facebook and You Tube. 

Community Engagement :  

In spite of the Covid-19 pandemic and necessary curfews and lockdowns during October, Community participationwas strong as LFJ members and representatives were hosted by community partners such as Church of St Margaret's Liguanea, Bush Park SDA Church Adventist Youth Society and subsequently employees of eGov Jamaica and JN group via in-person and virtual engagements.  

Laps for Lupus Awareness:  In our second Laps Your Way virtual lapathon, members and supporters used sharable graphics to raise funds and promote awareness while posting their "laps" activity online, culminating in our 4th (and second Virtual) Staging of Laps for Lupus Awareness Virtual Event sponsored by Title Sponsor JN Group.  Attendees enjoyed a fun, interactive event hosted by MC Sakina Deer featuring workout with Mr Jamaica Kurt Dunn, Comedy Gamesman Dalton Spence, musical performances by Remarkable Arts Company, while Prizes and Give-Aways added to fun and fellowship.  

Put on Purple Fridayscontinued to grow in popularity with members and the public being encouraged to wear something purple each Friday in October, to promote awareness and support for Lupus Warriors, triggering a spike in LFJ merchandise sales.   

Virtual Lupus Symposium: The Month's activities culminated in the Foundation's Flag ship event, held once again in the virtual space, under the theme Children & Youth with Lupus - Improving Outcomes through Knowledge and Support.  Supported by title Sponsor National Health Fund and others the event was opened by representatives of the Ministry of Health and Wellness who commended the Foundation on its continued contribution to lupus education and care.  International and local experts including Key note presenter Prof Earl Silverman of University of Toronto, shared insights on Outcomes in Paediatric Lupus, as well as addressing areas of Kidney, Skin, Treatment adherence and Adolescent with lupus, while a multidisciplinary panel tackled practical ways to support children and youth with lupus in home, school and health care  and community settings.  Patient perspective was strongly represented with a short film Voices of Young Warriors while attendees were treated between sessions to musical pieces by students of Music House in support of Lupus awareness.  Even on the first day off lock down, over 500 persons joined in the interactive Zoom conference or viewed the livestream on YouTubeand Facebook, including over 100 registered medical professionals who were issued continuing medical education credits. Excellent reviews were received on post-event surveys.

View the Voices of Young WarriorsVideo on our You Tube page! Don’t forget to like, follow and subscribe!

The LFJ extends a big thank you to all our volunteers, sponsors, donors, members, supporters and partners who rallied to ensure a successful month, promoting greater awareness about lupus, encouraging, educating, and rallying others to the cause. We believe that lives will be saved and outcomes changed through your effort and support for this annual initiative as we continue the Fight Against Lupus.

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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!

Kingston, Jamaica, October 20, 2021: On Sunday October 31, 2021, Lupus Foundation of Jamaica (“LFJ” or “The Foundation”) will be staging its Annual Lupus Symposium under the theme, Children and Youth with Lupus: Improving Outcomes Through Knowledge & Support, with local and international speakers placing the spotlight on improving treatment and support for this vulnerable group.

The Annual Lupus Symposium has been a flagship event for the LFJ and will be held this year with the support of Sponsors including Title Sponsor National Health Fund. This is the second fully virtual staging, with last year’s virtual event attracting over a thousand live attendees including over a hundred registered medical professionals. The Symposium is again expected to attract strong attendance across Jamaica, as well as regionally and internationally through live streaming on multiple platforms and convenient online registration.

The Annual Lupus Symposium uniquely provides both Continuing Medical Education for a range of health professionals while incorporating subjects of practical interest to patients and the public in a shared learning environment.

Paediatric Lupus expert Prof Earl Silverman of Hospital For Sick Children in Toronto will make the key note presentation on Outcomes in Paediatric Lupus, while a range of topics such as Lupus Kidney Disease in Children, Cutaneous Lupus in Children, The Adolescent with Lupus, as well as Practical Therapeutics and Promoting Adherence will also be presented by local experts.

Aspecial segment called "Making The Difference" will feature a Panel Discussion among individuals and experts representing the various settings in which children with lupus and their families operate, may encounter challenges and might optimally receive support – including school, home, community and health care settings. Other features such as short films, live polling and quizzes, interactive question and answer and music items are expected to further contribute to maximal participant engagement. Attendees can register in advance on the Foundation’s website for full access to the event and can also view the livestream on their Youtube and Social Media pages.

Lupus a chronic or lifelong autoimmune disease that is widely considered a disease of the Young, with an average age of 22 and up to 20% being diagnosed as children.  Lupus in this age group can be severe, with more frequent involvement of internal organ systems such as kidney, blood and nervous system.  According president of the Foundation Dr Desiree Tulloch-Reid, early recognition and treatment are critical in the management of lupus; however there can be a range of other factors that can affect outcomes and quality of life of children and youth with lupus and their families: “Access to appropriate care, impact of disease or treatment on appearance or participation in school, extra-curricular or social activities, understanding of the disease and treatment, treatment adherence, financial challenges, mental health and family dynamics can also have an impact. These are some of the issues we will seek to uncover and address during the conference by sharing practical and immediate solutions to empower those present while also identifying other areas for special intervention.”

The Lupus Symposium represents the culmination of a month-long public awareness campaign in October, Lupus Awareness Month. Aimed at increasing awareness, reducing stigma and encouraging greater support particularly for young persons living with lupus and their families, the Campaign has comprised of articles, media interviews by lupus patients and health professionals, a series of online Events, an ongoing Social Media campaign, and a range of community engagement activities – such as Put On Purple Fridays and a Children & Youth’s Poster Competition.

The public is invited to visit the LFJ website or social media pages, or contact their Learning Centre for more information about events and activities, the work the Foundation is doing, and guidance on how to join, donate or volunteer.

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Lupus Foundation of Jamaica is a member-based, volunteer-run charity in operation since 1984 dedicated to improving the lives and outcomes of persons with lupus through information, support, advocacy and research. To Learn more about the work the LFJ is doing, visit website and social media pages:

website: www.lupusfoundationofjamaica.orgFacebook | YouTube | Instagram | LinkedIn

or to contact their Learning Centre at 7 Barbados Avenue, Kingston 5, Phone:876-754-8458, Helpline: 876-778-3892 email:info@lupusfoundationjamaica.org

For more information about this article, contact Dr Desiree Tulloch-Reid at rheumjamaica@ymail.com or 8765744954.

POSTER COMPETITION
LUPUS AWARENESS MONTH 

The Lupus Foundation of Jamaica (LFJ) is launching its poster competition targeting children 7 - 12 years and teens 13 - 19 years. The objective of the competition is to raise awareness, while displaying creative skills. Entrants will be assessed by a panel of judges based on adherence to the themes, originality, creativity and visual effectiveness. Entries with all the requirements must be sent to the Lupus foundation of Jamaica at 7 Barbados Avenue info@lupusfoundationjamaica.org, no later than November 5, 2021. Winners to be announced Wednesday November 10, 2021. The following guidelines must be acknowledged: • Must be 8.5”x11” in size (letter size paper) • The orientation of the work area must be landscape

• Must feature a ¾ inch border
• The final work must be mounted of hard board/card stock Must reflect the theme: Children and Youth with Lupus: Saving Lives Through Knowledge and Support May use any or all of the following: liquid paint, pencils, pencil crayons, crayons or markers Must not be manufactured/ printed at a printer Must not be electronically printed

NB. Entrants are also required submit a 30 second video recording of the artist describing the piece. Alternatively a scanned copy along with a 100 word description may be sent. Shortlisted persons will be asked to submit the original piece prior to the day of the award. Selected pieces may be displayed at the LFJ Learning Centre and in LFJ publications.

Poster Judging Criteria:

For further details on how to enter, persons should visit the Lupus foundation of Jamaica website or contact LFJ at (876) 754-8458 / Email- info@lupusfoundationjamaica.org

Criteria

Points

Effective Communication of the Theme

20 points

Originality

-Conveying message

20 points

Craftsmanship

-Technique, quality, style of work

40 points

Design/ Composition

-Visual appeal, use of colour, organization

20 points

Total

100

LUPUS FOUNDATION OF JAMAICA

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

info@lupusfoundationjamaica.org | www.lupusfoundationjamaica.org

DCFS Registered Charity # C100-1510C

Kingston Jamaica October 11, 2021: October is observed as Lupus Awareness Month in Jamaicaand other Commonwealth countries. Lupus Foundation of Jamaicahas begun its month-long campaign to spread awareness of the life-threatening disease under the theme, “Children and Youth With Lupus: Saving Lives Through Knowledge and Support”.

A key calendar event, Laps for Lupus Awareness is set for Sunday October 17, 2021 at 6pm and seeks to raise not only awareness, but critical funds for the Charity’s member Medical Assistance Fund and other support programmes. Pete Smith, the Foundation’s Finance Director stated, “Laps for Lupus is an event geared primarily at raising the awareness of the public of the disease lupus and how persons affected can receive help and support. It has grown to be a fun and interactive event that members look forward to each year. Laps for Lupus is in its 4th year and one of the conceptualizers was Emily Dixon, a current member and Lupus Warrior.”

Due to COVID-19 safety restrictions, the Foundation has gone virtual with the event. “This online format has turned out to be a great opportunity to engage new supporters across the island to participate in the awareness effort,'' commented President of the Foundation, Rheumatologist Dr Desiree Tulloch-Reid. This year’s staging is expected to be vibrant and family-oriented as is customary.

Laps for Lupus Awareness 2021has been bolstered by title sponsor, JN Foundation, and will be hosted by Sakina Deer. Activities will include a workout session led by fitness guru Kurt Dunn, special performances, a healthy food preparation demo, games by Comedy Gamemaster Dalton Spence and a host of giveaways courtesy of Sponsors. Smith remarked, “It has been heartening to see these brands and individuals come on-board to support our drive to raise awareness of this illness.”

Lupus is considered a disease of the young hence this year’s focus on children and youth. Lupus in children can have far-reaching impacts on their physical, academic and social development. However, greater awareness among the wider society can lead to earlier detection and effective treatment.

To help promote the educational effort and to show support for Lupus Warriors, members of the public are encouraged to register online for this or other upcoming events, wear purple on Fridays during the month of October and join in the social media initiatives. They can also make tax-deductibledonations in person or via the Foundation’s website.

About Lupus Foundation of Jamaica:

Lupus Foundation of Jamaica is a member-based, volunteer-run charity dedicated to improving the lives and outcomes of persons affected by lupus through information, support, advocacy and research. The Foundation can be contacted at their Learning Centre at 7 Barbados Avenue,8767548458 or info@lupusfoundationjamaica.orgfor further information.

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For further Information, please contact Desiree Tulloch-Reid, rheumjamaica@ymail.comor 8765744954.

Kingston, Jamaica, September 30, 2021: Unlike most chronic (or life-long) conditions, lupus is considered a disease of the young, with an average age of onset of 22 years and up to 20% of persons being diagnosed as children. With this in mind, the Lupus Foundation of Jamaica (“LFJ” or “the Foundation”) has chosen the theme “Children and Youth With Lupus: Saving Lives Through Knowledge and Support” to anchor its observance of Lupus Awareness Month this October. The observance of October as focal point for Lupus is a seminal event each year in Jamaica and the wider Commonwealth territories.

Dr. Desiree Tulloch-Reid, Consultant Rheumatologist and President of LFJ points out that “Lupus in children and youth generally manifests more severely with more frequent involvement of critical organ systems such as kidney, nervous system and blood, causing lupus to be, unfortunately, one of the significant medical causes of death among youth in Jamaica.” Dr. Tulloch-Reid further adds that the disease can also have a far-reaching impact on a child’s physical, academic and social development.

On the other hand, greater awareness in the wider society can promote earlier detection and access to effective treatment, reduce stigma and encourage greater support for those living with lupus and their families.

Lupus is a serious lifelong autoimmune condition that occurs in high rates in Jamaica and Afro-Caribbean populations, with an estimated six thousand Jamaicans living with the sometimes life-threatening disorder.

Lupus Foundation of Jamaica is inviting corporate Jamaica and the Public at large to join in supporting a campaign aimed at increasing awareness and improving outcomes of Children and Youth living with Lupus.

The Lupus Awareness Month Campaign is supported by committed sponsors including Jamaica National Group and Barita Investments Limited. The campaign will engage the public through a Virtual Launch on October 1 at 10 am on their YouTube and Facebook pages. The programme then continues throughout the month with video features, live media interviews and enhanced public education efforts. Additional public engagement will be channelled through social media, school-based and community-based activities such as Church Service, Put-on-Purple Fridays and a Children’s Poster Competition.

As October progresses, the Lupus community and the general public can look forward to other key events, including a special edition of the Foundation’s monthly live Q & A virtual programme, Ask The Expert Live – Youth Edition, and a family-friendly virtual event, Laps for Lupus Awareness on October 17, 2021. Medical Professionals will also be engaged with a virtual Lupus Symposium on October 31, 2021 sponsored by the National Health Fund and livestreamed free to the public.

A 38-year-old charity, LFJ is inviting corporate Jamaica and all Jamaicans to support the campaign by participating in activities or sharing information on social media. The Foundation is always inviting and welcoming assistance with raising funds to continue essential programmes and services offered to its over three hundred members and the general public. Services being offered by the Foundation include a Help Centre, monthly newsletter, educational materials and programming, support group meetings, member medical assistance and counselling, advocacy and promotion of patient-centred research. The public is invited to visit the LFJ website or social media, or contact the Centre for more information about upcoming events and activities, the work the Foundation is doing, and guidance on how to join, donate or volunteer.

As Dr. Tulloch-Reid reminds, “knowledge about lupus does save lives and everyone can support the fight against Lupus.”

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Lupus Foundation of Jamaica is a member-based, volunteer-run charity in operation since 1984 dedicated to improving the lives and outcomes of persons with lupus through information, support, advocacy and research. To Learn more about the work the LFJ is doing, visit website and social media pages:

website: www.lupusfoundationofjamaica.orgFacebook | YouTube | Instagram | LinkedIn

or to contact their Learning Centre at 7 Barbados Avenue, Kingston 5, Phone:876-754-8458, Helpline: 876-778-3892 email:info@lupusfoundationjamaica.org For more information about this article, contact Dr Desiree Tulloch-Reid at rheumjamaica@ymail.com or 8765744954.

THE Lupus Foundation of Jamaica says a number of lupus patients are still holding off on being vaccinated against COVID-19 because they are waiting to have questions answered or to get permission from their doctors. 

In a release yesterday, the foundation said that accessing their doctors has become more difficult with the recent surge affecting operations of both public and private clinics.

“There is conflicting information about COVID-19 and the vaccines, confusing even for the general population,” said Dr Desiree Tulloch-Reid, consultant rheumatologist and president of the Lupus Foundation of Jamaica.

She added: “Patients with autoimmune conditions are in a special situation because they have an immune system that is overreactive in some ways, and yet is less effective with coping with infections. In addition, many medications for lupus also suppress the immune response in order to control the disease.

“Persons with lupus will naturally have many questions, and so it is important for lupus patients to be empowered with the knowledge and information they need to make better and more timely choices. However, based on the evidence, we are strongly encouraging all lupus patients to get vaccinated as soon as possible — with any of the vaccines currently available.”

Dr Tulloch-Reid and colleagues are among several specialist physicians and other health professionals who volunteer with the Lupus Foundation of Jamaica, monitoring the latest research and contributing to educational materials and programmes disseminated through its various platforms as they keep both health professionals and patients informed during the pandemic.

Patients and the public are invited to view educational programming and information provided on the foundation's YouTube channel, website and social media channels or contact the foundation's learning centre or help line for further information.

The foundation, meanwhile, urged people with lupus to become members of the foundation in order to benefit further from monthly newsletters and support group meetings, WhatsApp group interaction, pharmacy discount programmes, free counselling and other benefits to help them manage their condition.

The Lupus Foundation of Jamaica is a member-based, volunteer-run charity in operation since 1984 and is dedicated to improving the lives and outcomes of persons with lupus through information, support, advocacy and research.

September LFJ Newsletter - Click Here

• Covid19 Vaccine Shows Efficacy In Lupus
• Lupus Awareness Month Schedule of Events

There were many inspirational stories coming out of the Tokyo Olympics. However one that may have particularly stood out to the LFJ community was that of Kirani James of Grenada. The 2012 400m Olympic champion experienced major setbacks after his diagnosis with the autoimmune condition Grave's disease in 2017 and the loss of his mother in 2019. But on August 5, against a stellar line up, James staged an amazing comeback to win a Bronze medal, his third consecutive Olympic medal in that event.

Graves disease, like Lupus, is an autoimmune condition, in which the body’s natural defence system becomes dysfunctional and attacks healthy tissues, causing inflammation and illness. In Grave’s disease, this inflammation primarily targets the thyroid gland, a gland at the front of the neck that produces hormones critical for regulating the body’s metabolism.

James’ story recalls that of other athletes who have fought autoimmune disorders to stand out in their fields. One such person is famed US Olympian Gail 

Devers who battled severe Grave's disease that threatened to end her career. After embarking on an intensive and lifelong treatment programme, Devers came back to win consecutive Olympic Gold in Barcelona and Atlanta. She continued to compete with distinction until age 40 and today remains an advocate for Grave's disease awareness with the goal of making sure that millions affected “are under a doctor’s care”. She told CNN news:

"I believe I'm stronger at having to go through what I went through ... Everybody's faced with challenges. We all feel like sometimes walls are closing in on us and there's no way out.What do you do? You remember that strength and resilience that you have when you step on the line."

Tennis star Venus Williams also endured debilitating symptoms of Sjogren's syndrome for 7 years before being diagnosed in 2011, coming back to win gold in 2012 and 2016 Olympics. In an interview with Prevention Magazine in 2019, Williams had this advice for persons battling autoimmune disease. "Don’t be discouraged, because what [you're] going through is similar to other people," she says. "Talk to those people who understand you or have a similar condition, reach out, and build a [support] team. Don’t isolate yourself. Don’t give up."

As we salute our athletes who gave their all in Tokyo, we want to also recognise all our brave lupus warriors, everyday heroes who who defy the challenges and continue to step out on the line of life each day and inspire others. We salute you!

https://edition.cnn.com/2021/07/06/sport/gail-devers-olympics-graves-disease-spt-intl/index.html

https://www.prevention.com/health/a28446557/venus-williams-sjogren-syndrome/

Lupus Foundation of Jamaica is a volunteer-run, member-based charitable organisation in operation since 1984, dedicated to improving the lives and outcomes of persons with lupus through information, support, advocacy and research. To learn more, join, volunteer or donate visit www.lupusfoundationjamaica.orgor call the help line at 8767783892.