Inactivity, Isolation and Impact on Daily Life Top Concerns of Lupus Warriors

6 May 2020 4:41 PM | Anonymous

World Lupus Federation issues global report for World Lupus Day highlighting the life-altering effects of lupus and the challenges people with lupus face every day.

(Washington DC) Almost half (43%) of people living with lupus responding to a 2017 poll indicated that they worry the most about physical inactivity and social isolation due to the debilitating effects the autoimmune disease has on the body. Nearly half (47%) of the participants also felt that the impact lupus has on daily living is most misunderstood by their physician, while almost one-third (30%) believed that the emotional impact is most misunderstood.Almost half (47%) of those who responded to the World Lupus Federation (WLF) poll indicated they want better management and treatment options available to them through their physician.

Only one treatment developed specifically for lupus has received regulatory approval since the 1950’s.These opinions are included in the “Lupus Knows No Boundaries e-Report,” developed through a collaboration between the WLF GlaxoSmithKline (GSK) and for World Lupus Day (May 10).

The report brings together firsthand experiences of people with lupus, their advocates and those who treat them, to tell the real story of lupus, highlight-ing the ongoing physical and emotional needs of those who are affected by this incur-able disease. The full report is available online at worldlupusday.org.

“I first came to know lupus through my childhood friend, Lucy Vodden, about whom the song Lucy in the Sky with Diamonds was written,” said Julian Lennon, photographer, author, musician, philanthropist and global ambassador for the Lupus Foundation of America. “It was Lucy’s struggles that opened my eyes to how devastating the burden of lupus is on millions of individuals and their families.”

Shannon Boxx was a member of the United States women’s national soccer team, winning three Olympic gold medals before her retirement in 2015. But for most of her career, she was secretly carrying the burden of a lupus diagnosis. “I decided to speak publicly about lupus because I was tired of hiding it. I was at a point in my career where I knew I probably wasn’t going to play much longer and I felt I had a real responsibility, being in the public eye, to talk about lupus and bring more awareness,” said Boxx.

Public awareness of lupus remains stubbornly low, contributing to public misunderstand-ing and misconceptions about the disease. A 2016 global opinion survey* found that over half of the respondents (51%) were unable to identify the physical complications associated with lupus and more than a third (35%) did not even know that lupus was a disease.

The World Lupus Federation, a global coalition of lupus patient groups, is working to raise the public profile of the disease.

“We’re calling for everyone to unite and take action on behalf of those affected by lupus,” said Sandra C. Raymond, President & CEO of the Lupus Foundation America which serves as the Federation’s Secretariat. “By shining a light on lupus we can ensure that friends and family, healthcare professionals, employers, government officials, health insurers and pharmaceutical companies are aware and informed of the many and varied challenges that people with lupus face.”

“The e-Report and Twitter Poll findings show that there is more that can be done to raise awareness, understanding and prioritization of this debilitating disease and to give patients the confidence to speak up about the impact of their symptoms,” said Dr. Alex Liakos, Global Medical Affairs, GSK. “At GSK, we are delighted to have been able to collaborate with the World Lupus Federation and look forward to continuing to support the needs of those living with lupus in future campaigns.”

“It’s our responsibility to get involved and do whatever we can to help fight this unpredictable and misunderstood disease,” said Julian Lennon. “It is my goal to keep fighting and bringing attention to lupus so we can raise the money needed to develop better treatments, provide support to people affected and fund the research that someday will bring an end to lupus and its brutal impact on people’s lives.” 

Source: https://worldlupusday.org/news/inactivity-isolation-and-impact-on-daily-life-are-top-concerns-of-people-with-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.


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