Sjogren’s Tracker was an idea borne out of necessity and personal experience. I was diagnosed with Sjogren's in my late 20's, although I had exhibited symptoms for 5 years prior to my diagnosis and was sent around to various specialists before they decided it was just allergy and psychological stress. After finally obtaining a diagnosis, I was initially told that Sjogren's would just be dry eyes and dry mouth and that there was not much that could be done for me other than prescribing me with Plaquenil. After I insisted that I experienced flares in symptoms of fatigue, brain fog, and pain, I was finally prescribed Prednisone to take during flares. I was then told to try to keep track of my symptoms and Prednisone intake so that I could report my progress to my rheumatologist.
Initially, I tried notebooks, but could never keep up with writing in them for more than a week. Then, I started documenting symptoms and medication information on an Excel sheet and graphing them manually. I found the visual component helpful for me to see how many flares I've had in the past year and how severe they were compared to the previous year. To my surprise, I discovered a pattern: that I always experienced severe flares in June and October. Moreover, I started exhibiting recurrent UTI's, and at one point decided to graph the time frame of my UTIs as horizontal lines along the bottom of my flare information and medication intake. That's when I discovered that I almost always had an UTI after a course of Prednisone that I took during flares. It may seem obvious in hindsight, but I did not make the connection until I was able to see things visually graphed next to one another. This is what led to the design of the Trends section for the app.
During this time, I was also looking for a symptom tracking app to help make the process easier for me (rather than manually graphing things periodically). I found a number of apps, some better than others, but ultimately even the best ones I found didn't address all of my needs. For example, some were specific to migraines or pains around the body, but I had other, more specific symptoms. I also wanted to track aggravators and food groups, along with my Prednisone dosages, which wasn't something most of the other apps offered. And from my personal perspective, some of the apps gave me so many choices and things to input that the process felt overwhelming. I felt that if it would take more than 3 minutes for me to enter all the information for a given day, then I was unlikely to stick to the regimen. Hence, I designed Sjogren's Tracker in a way such that you can customize things you want to keep track of ahead of time, and on any given day only need to make decisions with respect to your pre-set variables. I wanted to make the daily check in process as quick as possible so that users like me would consistently use it, which would also provide more accurate information over time. During the initial design process, I also made it so that users would only really need to check in when they experience a flare. If they feel fine and don't check in, the app records a default of no symptoms for that day.
Moreover, during my various doctors' appointments, I noticed that my doctors always asked questions like: "how many flares did you have in the last year, how long did they last"; "how often were you on Prednisone and at what dosage"; and "what were your main symptoms." Things like that were difficult for me to recall, especially with the brain fog that so often accompanied me. But, I wanted to be able to provide accurate information to my doctors. Hence, I created the summaries in the Insights section. There is currently a breakdown of symptoms by frequency, a summary of the number and duration of flares in the past 1, 3, and 6 months, and a summary of medication intake. I also added notes for certain medications like Prednisone and Aleve based on well-known risks of prolonged usage, which I have personally experienced.
Finally, I wanted to find a more scientific way of identifying triggers to my flares. Rather than relying solely on my intuition, I thought using hard data would provide more accurate results. Hence, I added the correlation calculations between symptoms and aggravators/foods (for premium subscribers). I wanted to see how often certain aggravators were checked off every time I experienced an increase in a particular symptom. Although any scientist will tell you "correlation doesn't mean causation," it is at least a good starting point to look at aggravators that are very commonly associated with a symptom increase. In the future, my goal is to incorporate machine learning to make more accurate predictions of which environmental triggers cause an increase in a particular symptom.
My goal is that you won't have to spend hours in front of a notebook writing down everything, only to have the information be shelved on a desk or in the ethers of your memory. My hope is that you will eventually need to check in as little as possible and spend more time on other aspects of your life, while the app finds connections for you to help you avoid those dreaded triggers or at least anticipate a flare with the support you need.
For more reading on my experience with an autoimmune condition, visit my blog at www.sjogrensdiary.com.
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At Sjogren's Tracker, our mission is to create innovative solutions to improve the lives of users and facilitate communications with physicians. We believe that businesses need not be solely profit-driven, but can also aim to create social benefit. In line with that, we want to make our app available for free, and premium features as affordable as possible. Help support our mission by trying out our premium features.
We are currently working with the Autoimmune Registry to gather statistics on all autoimmune diseases in the hopes of creating a system similar to the Cancer Registry. We want autoimmune diseases to receive the same level of recognition as it affects over 23 million individuals just in the United States. If you are interested in joining the registry and/or be contacted for relevant clinical studies for your disease, visit here: www.autoimmuneregistry.org/register.