the voice of lupus foundation
Trinidad and Tobagosince 2011
there is us in lupus
Who we are?
A pillar of strength
The Voice of Lupus Foundation, an esteemed non-profit organization fiercely committed to improving the quality of lives for all people living with Lupus in Trinidad and Tobago since 2011. Our unwavering commitment lies in investing in initiatives that foster Advocacy, Awareness, Public Education, and Patient Support, thereby serving as a beacon of hope for those affected by this complex auto immune disease.Advocacy stands as the cornerstone of our mission, recognizing the multifaceted impact Lupus exerts on individuals physically, emotionally, and socially. Through our tireless advocacy efforts, we endeavor to amplify the voices of Lupus patients, champion their rights, and advocate for equitable access to care and support services.
What is Lupus?
understanding lupus
Lupus is a chronic disease with a variety of symptoms caused by inflammation in one or more parts of the body.Lupus is not contagious and is not related to AIDS or cancer.
It belongs in the family of diseases that includes rheumatoid arthritis, multiple sclerosis, juvenile diabetes, and scleroderma.The most common type of lupus is SLE (systemic lupus erythematosus). It is a complex and baffling condition that can target any tissue or organ of the body, including skin, muscles, joints, blood and blood vessels, lungs, heart, kidneys, and the brain.There are other types of lupus which mainly affect the skin. A few individuals develop drug-induced lupus as a response to some medications used to treat other conditions. These symptoms disappear when the person stops taking the medication.Who gets lupus? Anyone can: women, men, children. Between the ages 15 and 45, eight times more women than men get lupus. In those under 15 and over 45, both sexes are affected equally.
join Voice of Lupus Peer support group
us in lupus
Keep up to date with all our advocacy and educational initiatives by following us on Facebook via https://www.facebook.com/thevoiceoflupusfoundation or join VLF's Peer Support Group on Facebook via
https://www.facebook.com/groups/165228584657433
or our Whatsapp Support group via 327-0220
get involved
what is advocacy?
What is Advocacy?
Advocacy is not a science. It requires persistence and patience.Advocacy is persuading a person with influence, the public, businesses, organizations, or governments to change attitudes, policies and/or practices about a certain issue. There are several types of advocacy:Individual Advocacy
Third-party Advocacy: when a person or organization, not directly involved in the issue, represents a person or group in advocating for change.
Systemic Advocacy: aimed at changing legislation, policies, regulations or attitudes in order to benefit a group.
Why Advocate?
Even in a perfect world, where systems work, and needs are met, there will always be people whose voices remain unheard and their need unrecognized.
Advocacy is based on principles that each of us have the right to be heard and control how we are treated. Often, getting what we need is simply a matter of knowing where to go for advice or an answer, or finding what is available.
There are situations when getting what we need requires that we convince someone or defend our rights and challenge a system that is rigid and archaic. In these situations, changes are needed. The way to make these changes is advocacy. This may mean, raising awareness or educating the public.Purpose of Advocacy
The unpredictable “flares” of lupus can severely affect many aspects of daily life. As a result, you may often turn to family, friends, the medical system, governments and other services for help. This can sometimes be a frustrating and unsettling experience. This kit was developed as a support resource to provide you with information, tips and techniques on how to self-advocate for yourself. The goal is to educate you about your rights and how to get what you need.Voice of Lupus is your partner in advocacy.Empowerment is the basic attitude underlying advocacy. It is the conviction that every person has the right to be heard, the right to understand, the right to decide, the right to that “level playing field”. The more we act on this attitude, the more people will come to recognize the rights of persons living with lupus.
Lupus and Mental Health
