Yesterday, Sunday May 10, 2020 was observed globally as World Lupus Day and May is also Lupus Awareness Month.
Over the past several years, I have been so proud to serve as a global ambassador, patient advocate and President of the Voice of Lupus Foundation to raise awareness of lupus both in Trinidad and Tobago and around the world. As some of you know, I have lupus and I continue to fight for awareness and do what I can to make a difference in the lives of people with lupus.
The Voice of Lupus Foundation is a registered NGO fiercely committed to improving the quality of lives for all people living with Lupus in Trinidad and Tobago since 2011.
We accomplish this by investing in initiatives, hosting events, programmes and planning campaigns that promote advocacy, awareness, public education and support for our patients.
Our organisation as an official member of the World Lupus Federation is seeking the help of the media to help spread the awareness of Lupus and continue our work of Giving Lupus a Voice as Trinidad and Tobago participates in the 15th annual observance of World Lupus Day.
This day is sponsored by the World Lupus Federation, a coalition of lupus patient organisations from around the world, united to improve the quality of life for people affected by lupus. Through co-ordinated efforts, the World Lupus Federation and the Voice of Lupus Foundation have been working to create greater awareness and understanding of lupus, provide education and services to people living with the disease, and advocate on their behalf here in T&T.
World Lupus day serves to call attention to the impact that lupus has on people around the world for a common purpose of bringing greater attention and resources to efforts to end the suffering caused by this disabling and potentially fatal autoimmune disease.
Lupus is more pervasive and severe than people think, and has a devastating impact that the public doesn’t realise. In fact, research shows that a staggering two-thirds of the public knows little or nothing about lupus. You all can help The Voice of Lupus Foundation change that.
There is no boundary to the impact of lupus here in Trinidad and Tobago. It affects people of all nationalities, races, ethnicities, genders and ages. Lupus can affect any part of the body in any way at any time, often with unpredictable and life-changing results. While lupus knows no boundaries, knowing all you can about lupus can help control its impact.
Symptoms of lupus include chronic fatigue, severe joint and body pains, organ failure, skin rashes, hair loss, depression, mouth ulcers and photo-sensitivity especially to sunlight.
We need to provide more support to people with lupus so they can better manage the many challenges of lupus, including its impact on physical function. And we know it’s only by working together that we will elevate lupus as an international health priority so it gets the attention and resources it deserves.
To win this battle, more people around the world must join our fight. The first step begins with education. Knowledge is a powerful tool that can defeat lupus. Knowledge can help those who are looking for answers and provide support and hope to people who struggle with lupus every day.
Knowledge also can rally people to our cause. With knowledge, they can take action to increase awareness, raise money for research, and encourage government leaders to do everything they can to help people with lupus.
There is more you need to know about lupus. Learn everything you can. Share your knowledge with others. Urge them to help us defeat this terrible disease.
Let’s join together to fight lupus.
To learn more about lupus in Trinidad and Tobago, contact: https://www.facebook.com/thevoiceoflupusfoundation/ or call our Lupus Helpline at 327-0220.
Here’s how you can help…
Make a gift in honour of someone you love this World Lupus Day, and help bring us one step closer to a world without lupus. Donate to The Voice of Lupus Foundation’s RBC account: 110000001427337
With your World Lupus Day gift, you will also help ensure lupus remains in the spotlight beyond World Lupus Day, and that all people with lupus have access to the resources and support they need.
Thank you for all you do every day to support people with lupus. We couldn’t do it without you.
• Reeanna Harrilal is the president/founder of The Voice of Lupus Foundation