Feb. 18, 2014

Painting a Picture of Lupus—Why you are the Artist That Matters Most

A bird’s eye view of lupus research from the Lupus Foundation of America’s Education and Research Department 

By Jacqueline Ware & Paola Daly, MHS

Medical research is a bit like an architectural masterpiece.  It takes planning, precision and lots of patience, but most of all, it takes vision and collaboration.  Lupus research operates the same way.  Scientists and people affected by lupus -- working together -- are the driving force behind lupus research, whether we are discovering more effective treatments or better ways to manage the disease. 

When you take part in research you bring a unique perspective to the table.  Your experience paints a picture that helps researchers understand diseases like lupus, and looks at ways to manage and treat it.  And it’s important that everyone participate because we need to paint a diverse picture that represents all people affected by the disease.  Because it is important that studies represent the general population, researchers look for volunteers of different ages, ethnicities and backgrounds.  For example, we know that lupus is more prevalent in minorities -- and certain minorities experience more severe and specific types of lupus than others.  We need to make sure that we include minority groups.   

As a caregiver, your participation in lupus research is also important.  Caregivers play a critical role as part of the care team for those with a chronic disease like lupus.  We need to develop new tools and resources for caregivers to help them help their loved ones.  However, for this to happen, we need studies to further understand how caregivers are impacted.  Better understanding of the caregiver role can also help generate advocacy for policy change, including better access to home health care.

There are so many opportunities for people with lupus and their caregivers to get involved -- everything from clinical trials that evaluate the safety and effectiveness of new drugs or treatment strategies to surveys that give us an in-depth look into views and perceptions about lupus and help shape lupus management strategies.  Sharing YOUR voice also helps the Lupus Foundation of America develop new tools and programs that fit your needs.  Consider participating in lupus research, and don’t assume that your voice is not needed.  Every voice counts and every experience paints a better picture of life with lupus, and how we can move towards a life without the disease.

The Lupus Foundation of America is now seeking volunteers to participate in a new online national survey called UNVEIL to further our understanding of the impact of lupus on people with the disease and caregivers.  The survey, which is being conducted along with Eli Lilly and Company and the research firm ICON plc, is looking at topics such as how lupus affects your health, your finances, your quality of life and more.  Learn more here and see if you qualify to participate.  And please let others know about the survey too so we can hear from them.  Those who complete the survey will be compensated for their time.

The UNVEIL survey is just one way you can participate in research and help further our understanding of lupus.  You can learn about other opportunities through the Foundation’s Center for Clinical Trials Education.  The Center is designed to help you further understand clinical trials, learn about ongoing lupus studies, evaluate your options -- and then make an informed decision about joining a clinical trial.

You may feel that being part of a research study sounds scary, but you shouldn’t be afraid to participate.  However, you should have a clear understanding of the nature and aims of a study, as well as your role in it.  Ask the study research team questions about anything that is unclear to you.  Before getting involved with a clinical trial evaluating a new drug, talk to your doctor and make sure the study is a good fit for you.  Not all studies are right for everyone.  But keep in mind that researchers conducting studies do have rules and safeguards in place to protect participants and ensure their safety.

By painting a picture of your life with lupus, you help create the most important masterpiece -- a life with a better understanding of lupus and new ways to manage and treat the disease.