News

Lupus Warriors, Volunteers and Supporters went all out to Make Lupus Visible for the 19^th worldwide observation of World Lupus Day on May 10, 2022 – from MAKE STRIDES walks across the island, to fundraising, media interviews and articles and creative pieces, to a Free Health Fair and live radio broadcast engaging government officials and our newest member, Miss Jamaica World. 

The enthusiasm and spirit displayed by the Jamaican lupus community caught the attention of World Lupus Federation officials working to raise momentum for the World Lupus Day observation in the wake of covid-19 restrictions.

In an email on June 13, Mike Donnelly, Vice President of Communications World Lupus Federation/Lupus Foundation of America, and coordinator of the event, commended the efforts and impact:  “Thank you so much for all of the hard work from the Lupus Foundation of Jamaica team for World Lupus Day. We really appreciate your support …. your organization was one of the most active partners amplifying the “make lupus visible” theme during your events and social media posts… thank you!

In case you didn’t see, The Federation posted a video montage of photos a few days after World Lupus Day https://www.youtube.com/watch?v=IJgNe3dZRcY

Monique Pryce, a brand new member and volunteer, jumped on board by invitation of a friend just in time to lead the Social Media campaign effort, along with veteran graphics volunteer Georgia Johnson.  In spite of the short timeline, she found the experience and enjoyable and inspiring one and saw the impact of her efforts.  “We engaged with our community through direct messages from lupus warriors and family/friends of warriors. They sought advice ranging from managing the illness to joining the Lupus Foundation. Others commented to congratulate the Foundation on its impact on warriors being supported.

“Our content also included Instagram and Facebook stories. The execution of our campaign led to an increase of approximately 30 new followers on Instagram and increased interaction on LinkedIn and Facebook.”

Special thanks for all who participated – volunteered, joined a walk, wore purple, donated, shared with a friend:  You helped us make the effort a success!

Do you still have photo or story of your own from World Lupus Day?  Go ahead and share or tag us!

Give your support!  Volunteer your time and skills for our Communications team, or make sure to like, follow and subscribe to our social media pages and invite a friend:  Facebook | YouTube | Instagram | LinkedIn .  Let’s join together to fight Lupus!

The Betting, Gaming and Lotteries Commission is inviting tertiary students from the Lupus Foundation of Jamaica members to apply for a grant of $60,000 towards their tertiary tuition fees.

The Betting, Gaming & Lotteries Commission (BGLC), a statutory body of the Ministry of Finance in the Government of Jamaica offers grants annually to tertiary level students through the BGLC Tertiary Education Grant, to provide assistance with tuition fees for full-time undergraduate students enrolled to attend an accredited tertiary Institution in Jamaica.

For the academic year 2022/23, the Commission has allocated 30 of its 300 Tertiary Grants of $60,000 for persons from vulnerable groups, including patient-members of Lupus Foundation of Jamaica. 

Applicants are invited to apply online on the BGLC website using a special link https://bit.ly/BGLCGrants-SpecialGroups on or before the application deadline of Friday July 15, 2022.

Applicants must be Jamaican, have a Grade Point Average (GPA) of 2.75 or greater and complete a 500-word writing assignment, as well as upload required documents at the time of application. However, the Commission has waived the usual age limit of 26 years for this group of special applicants. 

Other details including instructions for writing assignment and documents required can be found on the BGLC Website:  https://www.bglc.gov.jm/?q=Education_Grant

Applicants are strongly advised to notify the Lupus Foundation of Jamaica immediately upon completion of their application so that the Foundation can assist the Commission with the identification of the applicants in the database and to ensure they are considered among the “Special Applications” referred by the LFJ.  Contact the LFJ office at 8767548458 or 8767783892 or info@lupusfoundationjamaica.org.

US-based Lupus Advocacy Group Lupus Foundation of America has extended an invitation for LFJ Members and other international Advocacy Groups to join them in their annual Lupus Advocacy Summit, the nation’s largest lupus advocacy event.

Due to COVID-19 and security changes on Capitol Hill, the LFA will be conducting its annual event in a fully digital format for the third consecutive year, from June 27-29, 2022.

An anticipated 3000 lupus advocates will come together “in an immersive, experiential online platform to make an enormous difference in the fight against lupus”.

Visit LFA website to register for this free and empowering event where you can learn the latest in lupus advocacy, research, care and programs that support people impacted by lupus.

Kingston, Jamaica, May 13, 2022:  On May 10, 2022, Lupus Foundation of Jamaica joined in with Lupus advocacy groups around the world in the nineteenth annual observance of World Lupus Day, in an effort to call attention to and increase support for persons with Lupus in Jamaica.

The Jamaica campaign, dubbed LUPUS LEVEL UP: Make Lupus Visible, leading up to the day consisted of a Social Media campaign, television and radio interviews featuring medical experts and Lupus survivors (termed “Lupus Warriors”), displays at clinics, schools and business places, as well as distribution of purple ribbons and merchandise, with the public being encouraged to wear purple on May 10 in solidarity with those affected.  In addition, members of the Foundation organised walks (dubbed Make Strides for Lupus) and other activities in various locations across the island with images and recordings uploaded to Social Media pages.

The key event was a free mini- Health Fair held at Emancipation Park on May 10, where State Minister in Ministry of Health & Wellness, Juliette Cuthbert Flynn, and reigning Miss Jamaica World Khalia Hall participated in the Opening Ceremony hosted by radio personality Mr Shannon-Dale Reid.  Other participants included President Elect of Medical Association of Jamaica Dr Leslie Meade and Board Members of Lupus Foundation of Jamaica.  Loiette Donegan and Audrey Malcolm, members of the Foundation living with Lupus, respectively said a prayer and shared a poem “My Lupus Strides” prepared for the occasion.  Both participated with the Minister and the Beauty Queen in a symbolic release of purple balloons.

President Dr Desiree Tulloch-Reid expressed gratitude to all those who took time to support the event and other activities. “It is heart-warming to see the outpouring of support being shown by the Government, personalities like Miss Jamaica World, the Medical Community, lupus warriors, volunteers, media and supporters by their presence with us today…It is our hope that greater understanding and continued support promoted by occasions like these will indeed save lives and improve outcomes.”

State Minister Flynn, in officially opening the event, commended the Foundation for it’s efforts. “The work of advocacy plays a vital role in ensuring that systems are in place to give support – connecting those affected with information and care to better their outcomes. I wish to commend the Lupus Foundation of Jamaica for its on-the-ground work in building a community of care for those affected by Lupus.”

Miss Jamaica World Khalia Hall spent quite some time interacting with Lupus Warriors, volunteers and Medical Professionals at the Event where she was seen graciously accommodating photo opportunities and conversations.  She commented, “I have a close family friend with an autoimmune disease and though it is not lupus, I've seen how severely it can impact someone's health and personal life. There definitely isn't enough public awareness around lupus and so 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.” 

Attendees received free health checks including blood pressure, blood sugar and cholesterol checks, courtesy of National Health Fund with support of staff of Diabetes Association. Other Organisations participating in the Health Fair included Medical Professional associations like Jamaica Physiotherapy Association, Dermatology Association of Jamaica and Jamaica Kidney Kids who made presentations to attendees.  Mandeville Regional Pathology unit were strongly represented including their head Dr Racquel Lowe-Jones, a board member and one of the Organisers of the event.  She was accompanied by Dr Vitilius Holder of the Southern Regional Health Authority who treated attendees to an interactive Hula Hoop session that ended the day on a positive note.

For those unable to be present, a Live Broadcast by Riddim FM, hosted by Vernon Derby on his new show Spot On, kept listeners fully involved with interviews and conversations with health professionals, Lupus Warriors and volunteers. Sponsors of the event included Seaboard Jamaica, Guardian Group Foundation and National Health Fund.

• JOIN A MAKE STRIDES FOR LUPUS EVENT NEAR YOU
• • Kingston: 10 am from Lupus Learning Centre 7 Barbados Avenue along Knutsford Boulevard to Emancipation Park
  • St Ann: 12 noon from the town clock in Ocho Rios along Main Street Turtle River Park
  • St James: 5 pm Harmony Beach Park (or attend an interactive talk at Cornwall Regional Hospital 8:30 am)
  • Don't forget to share your photos 

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.

Survey Findings Released in Advance of World Lupus Day on May 10

In a recent international survey, the World Lupus Federation found that 87% of the survey respondents living with lupus reported that the disease has impacted one or more major organs or organ systems. Over 6,700 people with lupus participated in the survey from over 100 countries.

Lupus is a chronic autoimmune disease that can cause inflammation and pain in any part of the body where the immune system, which usually fights infections, attacks healthy tissue instead.

Nearly three-quarters of respondents reported multiple organs impacted, with an average of three organs affected. Skin (60%) and bones (45%) were the most commonly reported organs affected by lupus, in addition to other top impacted organs and organ systems including kidneys (36%), GI/Digestive system (34%), eyes (31%) and central nervous system (26%).

“Unfortunately, people living with lupus are told that they ‘don’t look sick,’ when in reality they are battling a disease that can be attacking any organ in their body and causing countless symptoms and other serious health complications,” said Stevan W. Gibson, president and CEO, Lupus Foundation of America which serves as the Secretariat of the World Lupus Federation. “The important work of the World Lupus Federation and its members helps to raise awareness of the challenges people with lupus face every day and brings attention to the need for more support across the globe, including from public and government leaders to increase funding of critical research, education and support services that help improve the quality of life for everyone affected by lupus.”

Among the survey respondents reporting organ impact, over half (53%) were hospitalized because of organ damage caused by lupus and 42% were told by a doctor that due to lupus they have irreversible organ damage.

The impact of lupus on the body goes beyond physical symptoms. Most respondents (89%) reported that lupus-related organ damage led to at least one significant challenge to their quality of life, such as:

• Participation in social or recreational activities (59%)
• Mental health problems (38%)
• Inability to work / unemployment (33%)
• Financial insecurity (33%)
• Mobility or transportation challenges (33%)

“Much of the world is unfamiliar with lupus and does not understand the pain we constantly deal with or the uncertainty of what organ or part of our body lupus will attack next,” shared Juan Carlos Cahiz, Chipiona, Spain, diagnosed with lupus in 2017. “These survey findings underscore the serious impact lupus has on our lives and why more must be done to raise awareness of this disease, and advance research and care.”

Click here to view a topline summary and the detailed survey results, and join us on May 10 to help make lupus visible across the globe for World Lupus Day. The World Lupus Federation leads the annual observance of World Lupus Day to bring more considerable attention to the disease and its impact on millions of people worldwide.

Scores of Jamaicans continue to suffer the debilitating effects of Lupus. The Lupus Foundation continues to support the fight against Lupus through its education programmes, advocacy and support to persons to living with the disease. 

On May 10, LFJ will be joining in with lupus groups across the world as we observe World Lupus Day 2022 under the theme LUPUS LEVEL UP: Make Lupus Visible.  We will be engaging all our members, supporters, media partners, community organisations, the public at large and all our online and social media increase awareness of lupus, specifically this year on the impact of lupus on the body’s organs. We are also seeking to raise funds to continue the work and support our Lupus Warriors.  

Greater knowledge of lupus can help save lives by promoting earlier diagnosis and treatment, reducing stigma and increasing support for those affected.  Help us MAKE LUPUS VISIBLE by participating in one our many activities across the Island leading up to and on World Lupus Day (WLD):

Ways you can participate:

• ·       Be a spokesperson (share about your journey live in an interview or for an article)
• ·       Record a short video to share your experience or an awareness message that we can post or share
• ·       Write a short piece that we can publish or quote
• ·       Create a display at your workplace or school
• ·       Coordinate or participate in an awareness walk in your campus, church or neighbourhood
• ·       Give a short talk or take photos at your post walk gathering
• ·       Volunteer
• o   Make ribbons (we'll need thousands)
• o   Be a greeter at our WLD event
• ·       Find us influencers or sponsors
• ·       Support our Social Media Campaign:
• o   Share our social media messages
• o   Tag us on your own social media posts
• ·       Share your skills:
• o   photography, video recording or video editing
• o   graphics for social media campaign
• o   visual or performing arts
• ·       Invite your family friends, followers, workplace or school and to wear purple on WLD and participate in a local event
• ·       Have other ideas?  Let us know! 

REGISTER HERE to participate in our WLD Events!

WorldLupusDay2022_Shedule.pdf

CONTACT US

Lupus Foundation of Jamaica

7 Barbados Avenue, Kingston 5

Phone:876-754-8458, Helpline: 876-778-3892

email:  info@lupusfoundationjamaica.org 

website: www.lupusfoundationofjamaica.org

Please like, follow and subscribe to our social media pages:

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ANNUAL GENERAL MEETING MARCH 30, 2022 - GET READY TO PARTICIPATE!

LFJ is a volunteer-run organisation led by an Executive Board elected by members. 

The Annual General Meeting (AGM) is open to all members, where members can review the progress of the Organisation towards its mission including evaluation of programmes and financial reports, and elect their Board of Directors for the coming year.  Members in good standing will be eligible to participate, including to nominate, be nominated and to elect or be elected to serve on the Executive Board.

To make sure you have the opportunity to participate, become a member or renew your membership today!  Have you signed up for membership in the past but not sure of your status? Check your Membership Status and update your contact and other informationby visiting our website– Give us a call if you need help. Once your membership is active you can log in with your email address to view your profile, download your membership card and access member only contentincluding nomination forms and instructions as well as Voting Instructions, Financial Reports and Resolutions as they are posted.  Learn more about other Member Benefits here.

Note that the AGM will be conducted online via Zoom link, with limited capacity for in-person participationby pre-arrangement only on a first-come, first-serve basis. Make sure to get in touch with us by Wednesday March 16, 2022 if you wish to participate in person or by proxy.

NOMINATIONS ARE OPEN!

As an active member you can nominate persons to serve on the Executive Board of the Lupus Foundation of Jamaica and also be nominated yourself.  Nominations should be be submitted by Wednesday March 16, 2022 to be vetted and submitted for the upcoming Annual General Meeting (AGM) on Wednesday March 30, 2022.  

Members can access more information including nomination instructionsand formson our website.  (To view and access member-only contentYou will first need to log inby clicking the blue LOG IN button at the bottom left of the main page - or top right from your cell phone.)

If you are interested in serving yourself, and would be open to being nominated, please reach out and let us know, at info@lupusfoundationjamaica.org, so we can follow up further with you.

VOLUNTEERS NEEDED!

Besides being elected to the Board there are several Committees you can serve on and many other ways to Volunteer or give of your time and resources to support our Warriors. 

Help and skills are currently needed in the following areas:

• Writing and/or Communications

• Accounting

• Legal

• Administration/Records Management

• Health care

• Social work

• Counselling

• Marketing

• Graphic Design

• Human Resources

• Grant writing

• Audio-visual tech skills

• Photography, Video recording/editing

• Event planning

Are you a people person who can make persons feel welcome and stay connected?

Are you good at coordinating and organising people?

Do you have time or tools to run errands or make deliveries?

Do you have creative skills in music or the Arts you would like to share?

Do you have contacts that could provide access to funds or other resources?

Reach out to us for more information about how you can get involved!

As the saying goes, “We are stronger together” – Join the fight today!

As the Covid-19 pandemic continues and following the recent surge of cases in January, our Medical practitioners are continuing to get many questions from lupus warriors about vaccination for COVID-19. Here is the bottom line:

The recommendation from our Medical Team at LFJ is for all lupus patients is to be vaccinated. Here are some of the reasons:

COVID-19 Vaccines Are Safe And Effective

COVID-19 vaccines can keep you from getting and spreading the virus that causes COVID-19. COVID-19 vaccines have been rigorously tested and approved by local and international regulatory bodies and are critical to reducing illness, hospitalization and death associated with COVID-19.

Evidence is showing that risk of complications from COVID-19 infection may be higher in some lupus patients who are on higher doses of prednisone or take certain immunomodulatory drugs to control their disease. Many lupus patients also have co-morbid conditions such as hypertension, diabetes, or heart, lung, or kidney disease which also place them at high risk for complications of COVID-19 infection. From this standpoint, the benefit greatly outweighs the small risk of post-vaccination symptoms or minor flares which are generally short-lived.

COVID-19 Vaccination Is A Safer Way To Help Build Protection

Get vaccinated regardless of whether you already had COVID-19. Evidence is emerging that people get better protection by being fully vaccinated compared with having had COVID-19.

Vaccines are effective in patients with lupus, although many persons with lupus may have a weaker response to the vaccine due to impaired immune response. As of November 2021, persons who take immunosuppressive medication to control their lupus or who are on dialysis are approved for an additional dose as part of their Primary series to ensure more complete protection. You would need to provide a letter from your practitioner to access this additional dose. You can download a copy to take to your doctor and take it with you to your nearest vaccination centre. You do not need a letter to get a booster dose (6 months or more after your last dose).

None Of The COVID-19 Vaccines Can Make You Sick With COVID-19

None of the COVID-19 vaccines contain the live virus that causes COVID-19 so a COVID-19 vaccine cannot make you sick with COVID-19.

As the immune system is stimulated to mount a protective response against COVID-19, post-vaccination symptoms such as malaise or joint pains may occur in some persons. These usually go away on their own without treatment and can be managed with rest and paracetamol. Reports of unusual clots associated with some vaccines in Europe and North American studies are very rare (4 per million persons); on the other hand, COVID-19 infection itself carries a significant risk of clotting, which can affect critical organs such as lungs, heart, kidneys, and brain, contributing to death during COVID-19 or longer-term disability following recovery. This is the reason all persons hospitalised with COVID-19 are immediately treated with blood thinners.

Once You Are Fully Vaccinated, You Can Start Doing More

After you are fully vaccinated for COVID-19, you can resume many activities that you did before the pandemic.

Staying in all the time for many persons can itself have negative health effects if this results in reduced exercise or physical activity or contributes to social isolation. In addition, even if you stay home, family members who go out to work or school can still unknowingly transmit the virus to you.

If you still have questions, we encourage you to check out our previous articles such as Covid19 FAQ and our March and September episodes of Ask The Expert Live on our YouTube Page, or make contact with your doctor about your specific concerns. Just bear in mind that if you remain unvaccinated while waiting for your appointment you remain at risk of contracting – and possibly experiencing complications of - COVID-19.

References:

Jamaica Information Service https://jis.gov.jm/COVID-19-vaccination-jamaica/

American College of Rheumatology COVID-19 Vaccine Clinical Guidance Summary for Patients with Rheumatic and Musculoskeletal Diseases https://www.rheumatology.org/Portals/0/Files/COVID-19-Vaccine-Clinical-Guidance-Rheumatic-Diseases-Summary.pdf