Sometimes I like to think of my immune system as a totally souped up race car (with inflammation stripes down the side, of course). It burns out fast, but man it is impressive while it is going. Other times I think of it as complete bodily anarchy with my cells alternately giving up and staging mutiny complete with tiny torches and microscopic pitchforks. Have a vivid imagination. In either case, this stems from the knowledge that as Lupus sufferers, we are carrying around an internal conflict and for every one of us, it is different.
Results of a study about how we think of Lupus and why it matters were released in May. I downloaded the study and it made me want to contact Dr. Joan T. Merrill, the lead researcher, who as described as having ” actively wrestling with complicated treatment decisions for patients with SLE in Oklahoma.” She is wrestling with it; which means she is really thinking about it and making decisions for each patient. Three cheers for engaged doctors and researchers. They are the ones to make all of the difference. The study comes to this rational, logical conclusion (if scientists come to conclusions, I am never sure on that):
“Not all patients who share a certain organ involvement are going to be optimally treated with the same medicine at the same dose. Some may need a combination of treatments; others may not need so much. A better understanding of those variables can be made, in part, by an improved classification of lupus. This would allow better results for more patients and avoid unnecessary toxic combination therapies for others. This is exactly where the field of lupus needs to go. Thinking of lupus as a subset of arthritis isn’t going to get us there. The time has come for a more rational approach to selection of therapy than treating lupus by the organ.
- from: Nature Reviews Rheumatology, 11, 385–386, (2015) doi:10.1038/nrrheum.2015.61, Published online, 05 May 2015
We are all different and we all have to be treated that way–even when we have the same symptoms. Rather than treating our skin separately from our kidneys, and looking at our lungs in isolation from our hearts, the study suggests looking a whole patient. The single person in the blue paper robe on the table in front of each doctor. It is inefficient. It will mean research is slower-going, but the right thing to do is to treat the patient not the collection of symptoms. Having been called “the skin lesion in room six,” I am elated to be thought of as a whole person. This recommendation makes me happy from my head to my toes and everything in between.
If you are as interested in Dr. Merrill as I am, the Lupus Foundation has an audio interview with her here. She is their medical director!