I was surfing Facebook this morning and I came upon a posted video from Lupus Foundation of America (LFA) called:
LFA-Real(tm) System is First-of-its-Kind Tool to Monitor Disease Activity
This caught my attention because this is more than a tool for physicians. The system has two parts:
- A doctor’s assessment of a patient’s lupus disease activity.
- A patient’s assessment of their lupus disease activity.
The idea is that the assessment on both sides of the stethoscope can be done quickly–and it can track disease over time.
I have had two experiences with tracking and assessment, and to be honest friends, they have kept me from going to the doctor for a couple of months now.
When I discovered a symptom tracker called Symple, which allowed me to track my daily symptoms and also the factors that might cause them (lack of sleep, vitamins, stress, etc.) I was elated. I tracked faithfully every day for more than a month. When I met with my rheumatologist, I showed her my data, explained the app in three sentences or less and offered to email the report Symple created from my tracking. She could not have cared less. She barely glanced at the screen. That was the end of the story. I was crestfallen because I thought this was awesome. In my 20 minute office visit, I can’t convey all of the pain and suffering over a month, three months, six months. And if I could I am CERTAIN it would sound worse than I want it to. The app, however is an honest, accurate assessment over the course of many days. This body of data takes into account the good and the bad days, and what is influencing them.My doctor didn’t see it that way. I don’t feel understood. I feel prescribed to. You can check out Symple by clicking here. And by the way, it is free.
Not too long ago I got really sick in a weird, Lupus sort of way. I had stomach problems, I was achy and miserable. I knew I didn’t have the flu. I suffered for a while and then out of nowhere I got hives. This is my Lupus nemesis. I spent years suffering from hives and sinus infections before I was diagnosed. It was awful. Once I was diagnosed and I started taking Plaquenil, the hives went away completely–for years and years. Until that day. I decided to go to see my primary care physician–in case it was the flu or something. I got a doctor filling in for mine and she was great. She listened. She was informative, she ordered a TON of blood work. A week later, when it all came back normal. I talked with her about it. I was still feeling miserable and my legs were covered in hives and here she was saying: all your blood work is normal.
As a lupus patient, this is something I struggle with. I want an actionable answer at all times. And you know what, there isn’t always an action to take.
I said thank you to the doctor and said, “I guess there is nothing left to say–I feel miserable, but according to my blood work, I am totally fine.” She stopped me there by saying: “No. You have Lupus. It doesn’t mean you aren’t experiencing symptoms.” I am sure I sat there staring at her for a moment as I imagined repeatedly banging my head against a wall. That was my last visit. I have no plan to go back to either doctor unless something awful befalls me, because seriously, what is the point? What is to be gained? Other than massive medical bills and more frustration (which leads to more symptoms).
Maybe LFA-Real will make a difference in this. If they can track what is a flare and what is a chronic symptom from a patient and match that with a physician’s observations and the test data? I am skeptical, but hopeful.
This is in the beginning stages, like just about everything with Lupus, but the system is free and open to use for everyone (Thanks, LFA). This System, which includes the development of the tools used to assess, and lots of input from patients and professionals alike, will be unveiled this year and you can watch the video by clicking here.