After firsthand experience managing symptoms of a rare disease, Natasha Gajewski used her design skills to prototype a mobile symptom journal that would help her better manage her condition. I met Natasha a number of years ago and have always been inspired by her bravery and tenacity; it takes a lot of energy and focus to deal with a chronic condition and ‘get better,’ and it takes perhaps even more to design, prototype, and build your own tool.
Tell us a little bit about your health background.
Well, I had always been that person who never got sick, so when I caught the bug going around my sons’ school I was surprised. I figured I’d shrug it off quickly, but it plagued me and a few other parents for weeks, leaving us weak and wretched. Soon enough, everyone got better. Except me. My symptoms went from bad to weird.
My fingers swelled up like sausages and turned deathly white. My knees locked up, my shoulders and wrists became unbearably painful. What started out as a simple bug was morphing into something really strange. But it took the paralysis of my hands during a photo shoot (I was a professional photographer) before I sought help.
The doctor took one look at me and pretty much kicked me out of his office. “Go see a rheumatologist immediately,” he said. So I called around and got an appointment several days later. That was when I learned that I probably had a connective tissue disease. Then this guy kicked me out, too. “This is a rare disease that will last your lifetime. You need a specialist. Get someone young.”
I ended up at a specialty clinic in New York. My medical team sifted through several diagnoses before settling on a rare condition called mixed connective tissue disease (MCTD). Because it behaves like scleroderma with a bit of rheumatoid arthritis and lupus thrown in, MCTD is like the jack-of-all-trades disease… though lucky for me, so far, it’s been a master of none!
When I first got sick, the crazy pain and rapid deterioration terrified me. A chance encounter with a patient with end-stage disease underscored how serious my condition was. I was all but resigned to a devastating prognosis. But my doctor worked hard to shift my attention away from a bad outcome to a good one. She began treatment immediately and aggressively. Equally important, she prescribed an optimistic outlook. She demanded that I set my sights on returning to normal. With her coaching, I unwound the fear and focused on recovery. I settled into the job of beating my disease.
When was your ‘aha’ moment when you realized you could use your design or problem-solving skills to address your condition?
Most aha moments happen in the shower. Mine happened after tumbling down a flight of stairs!
Among other side effects, my medications made me dizzy. One day, I lost my footing in a parking garage and landed in a heap at the bottom of the stairs. I wasn’t seriously injured, but the fall scraped the skin off my shin, leaving a large, slow-to-heal wound.
On the one hand this was bad news, because I was taking immunosuppressing drugs, and the risk for infection was high. On the other hand, pausing the drugs to heal my leg meant I could enjoy my first glass of wine in a long time. Which I did. And it was delicious!
Besides a glass of wine (or three), that little break from treatment gave me an opportunity to see what would happen without the support of medication. Were the drugs in fact holding my disease at bay? Or had I passed through the worst of it? In short, would I fall back into pain and disability?
So began my quest for a simple way to record my symptoms over time. iPhone in hand, I scanned the App Store for a symptom journal. I found several for specific conditions, but nothing flexible enough to meet the needs of my rare disease. So I started dreaming up my perfect app, and then sketching it.
As a professional photographer, I was already pretty comfortable with Photoshop. I used a tool called Balsamiq to do some wireframing to expand on my sketches, and then jumped into Photoshop and started creating the app screens.
One thing led to another, and I’d wireframed a prototype!
There was a learning curve, to be sure. But I read a lot and discovered some awesome tools and amazing templates that gave me a boost. At the end of the day, I had to do all the final design on Photoshop because I was the one building and shipping the assets! (And I still am, though with flat design it’s a lot easier now.)
The first version of Symple was really, umm, simple! Just a few screens for recording symptoms and medications (and other factors, too, because I was experimenting with diet modifications and swimming to alleviate pain).
Several years later, Symple is more polished, but it’s still easy to use and versatile. Common symptoms tie back to the ICD-10. Photos build a timestamped history of a rash or meals eaten or medications taken. The journal feature is a place to unload worries or capture questions for the next doctor visit. And the graphing feature allows end users to compare symptoms and overlay factors, to observe how factors affect symptoms.
How do you use Symple?
These days, I use it mostly to monitor symptoms that aren’t peculiar to my condition but to daily life, like my cycle, sleep patterns, and mood. I am very interested in how exercise improves mood, sleep and focus!
But pulmonary hypertension and fibrosis are serious complications of MCTD, so I pay attention to irregular breathing patterns too. I work hard to keep my pulmonary and cardiovascular systems strong and elastic. I also record incidences of difficulty breathing, at rest and under exertion (it is impossible to remember these incidences so getting them down in the app is invaluable). When data reveal that breathing has been problematic for a while, I drop in for a doctor’s visit and get a work up.
How have other patients used Symple?
The app has been in the app store for several years.
The most commonly reported conditions in the Symple community are those in which symptom identification and management are important, such as multiple sclerosis, rheumatoid arthritis, cancer treatment, and digestive disorders. Another cohort of end users are those whose conditions lack objective evidence and rely heavily on the patient to report symptom severity. These conditions include migraine, fibromyalgia, and emotional health. And the last cohort are those who are otherwise healthy but looking to optimize certain factors such as sleep, diet, and mood.
What about doctors – have you shared your ideas with them?
We are working with several primary investigators to explore ways to bring Symple into the clinical environment.
With the first team, we are designing a study to see if creating and generating a symptom history, and presenting that history in person during an office visit, can increase office visit efficiency, reduce the number of visits, and improve calculated risk scores in a busy psychiatric clinic.
With another, we are investigating using Symple as a tool for patients undergoing treatment for cancer to record and report side effects. Because cancer treatment often occurs in an outpatient environment, and because side effects vary from patient to patient, remote patient monitoring is ideal for patients undergoing cancer treatment.
One final, important question – how are you doing now?
At this moment, my life and health are wonderfully unremarkable. I enjoy an enduring gratitude for all that I can physically do. I suffer few symptoms on a daily basis, other than my fingers turning blue at the merest whisper of cold air. And various parts will go tingly and numb on occasion, but those are interesting symptoms compared to what I felt before.
Thank you so much to Natasha Gajewski for taking the time to share her patient design story with us – you can learn more about the app she created, Symple, here.