Lupus Society of Illinois

In 1973 a group of volunteers banded together to create what would evolve into the Lupus Society of Illinois (LSI).  For many years, the society was volunteer driven – committed to supporting the lupus community by providing educational information, raising awareness and providing general assistance to what was at the time a misunderstood disease with virtually no treatments.  In fact, patients at the time were often told the life expectancy for lupus was ten years from diagnosis.

Today, nearly forty years later, lupus patients can expect to live long lives with proper treatment but the pioneering spirit of the early volunteers lives on in the work of the LSI.  The organization is still committed to supporting Illinois lupus community by offering programs and services designed to help them live their best lives.  Lupus awareness has grown as the society’s reach extends beyond those in need to encompass those at-risk, like African-American and Hispanic/Latino populations, as well as the general public.

The Lupus Society of Illinois (LSI) serves the entire state of Illinois with lupus awareness and education.  Programs and services of the organization are designed for the estimated 65,000 Illinois residents living with lupus and the thousands more who care about them.  LSI targets all of its efforts to those at greater risk for lupus – minorities and women.

Minorities are two to three times more likely to acquire lupus.  Ninety percent of lupus patients are women and eight of ten new cases of lupus develop among women of childbearing age; however, anyone at any age can develop the disease, including men and children.

Lupus is an acute and chronic (lifelong) autoimmune disease in which the immune system becomes unbalanced, causing inflammation and tissue damage to virtually every organ system in the body.

Lupus can affect many parts of the body, including the skin, joints, blood and blood vessels, heart, lungs, kidneys and brain.  The health effects of lupus range from mild to life-threatening and the disease vacillates between periods of increased activity, called flares, and periods of remission.

Lupus can be particularly difficult to diagnose because its symptoms are similar to those of many other illnesses and major gaps exist in understanding the causes and consequences of lupus.  More than half of all people with lupus suffer four or more years and visit three or more doctors before obtaining a correct diagnosis.

Although lupus can become fatal, early diagnosis and proper medical care can often keep lupus under control.

Providing Illinois’ lupus community with the support they need is the society’s top priority which is why the LSI does not charge for its programs and services. 

Programs include:

The Resources for Lupus Patients Program provides personal support to lupus patients and the entire lupus community.  Hundreds of individuals contact the society every year searching for answers to personal issues including finding a doctor in their area, how to apply for disability and the latest on lupus research.

Educational Programs are offered throughout the year and tackle relevant topics about lupus and the issues facing the lupus community. There are two types of Educational Programs— seminars and teleconferences.  Seminars are live events that revolve around a theme, like empowering lupus patients or young women and lupus.  Teleconferences are conducted through a toll free conference call with experts on a specific topic allowing anyone in Illinois to benefit from the educational opportunity.  Educational materials from all events are provided on the website in order to assist individuals unable to participate to benefit from the material.

The Living with Lupus Grant provides financial assistance for a lupus related expense.  Each month, a board member reviews applications and selects two recipients from Illinois to receive up to $400 for an expense.  Past grants have paid for lab fees, insurance and transportation to doctors’ appointments. 

Services include Support Groups, Individual Peer Support, and Communications.  LSI also leads public awareness and advocacy efforts throughout the state while funding research on the national level.