Over the past nine years, I have learnt from my teachers and colleagues, but I must say that I have learnt the most from my patients. We still don’t know everything about lupus. There are true gaps in our knowledge, and some are our oversights. True gaps are the holes in our knowledge that exist despite our rigorous search for answers. However, there are some gaps because we did not ask all the questions.
What am I talking about? What brought you to see your lupus doctor? Was it something you had difficulty doing, or were unable to do? Something that was important to your day to day living. May be it was pain that limited you from doing what you needed to do or enjoyed. What is it that is most valuable to you as a patient? Getting back to your usual state before your lupus, or getting as close to that usual state as possible? I am referring to your “Quality of life”.
We all realize it is important to look at your blood and urine tests to assess your lupus, and in adjusting your lupus medicines. But now we realize the importance of knowing how YOUR lupus is affecting YOU and YOUR quality of life in UNITS that you can understand and compare over time.
Lupus affects your lives in so many different ways. We are in the process of learning more about the ways lupus affects your quality of life and ways in which we can include and measure your viewpoint.
BANDING TOGETHER therefore is very important for lupus at four levels:
a) Banding together of different specialties of doctors providing care for lupus, so we can all work together towards this goal.
b) Banding together of lupus doctors with their patients. This is very important so we can both learn from each other and set treatment goals from your point of view.
c) Banding together of lupus patients. Seeing others with lupus, listening or talking to them may help you cope with your disease.
d) Banding together of doctors, patients and the community. This is important so that diagnosis can be made early by appropriate recognition of symptoms and timely referrals.
I hope that YOU will find your way to band together for lupus and thus work towards improving your quality of life.
Meenakshi Jolly, MD
Director, Rush Lupus Clinic
Assistant Professor of Medicine
Rheumatology Section, Dept. Of Medicine &
Department of Behavioral Medicine
Rush University Medical Center