Designed by a Patient
My name is Amber and I designed Symptom Shark because of my experience being a patient over the years. I also happened to graduate from a design school where I fell in love with creating stuff that functions well.
When I was 10 years old, I started having migraines, which have continued through my adulthood. A few years ago, I had a medical event that triggered multiple chronic illnesses to develop. I have since learned to manage fibromyalgia, ME/CFS, muscle spasms, insomnia, and numerous other health issues. I became a professional patient and started to notice patterns as I was meeting with doctors or specialists:
- The appointment would be a month or two away
- By the time the day of my appointment rolled around, I was often more concerned about a different issue (for instance I would be seeing a migraine specialist - but my recent problem was insomnia)
- During the appointment, I would be asked many “on the spot” questions about the issue. For instance, how many migraines I had over the past 3 months
It could take me hours to prepare for appointments. I had to sift through my paper journal and prepare a summary. I’d pull out the information I thought the doctor would want to ask me about. Even then, I had a hard time giving them accurate information and often felt like I was “spinning my wheels.” This was all made more complicated and overwhelming because I was dealing with multiple chronic issues at the same time (not to mention brain fog).
I was hearing the same story from other patients, and wanted to put my experience to work in finding a solution. I recruited my husband, who works for CareEvolution on projects like the DETECT health study. Working with him, I was able to bring “Symptom Shark” to life. We designed it to be quick to set up and as easy as possible to use on a day-to-day basis, while remaining flexible.
Advocating for your own health is so important. The more data you have at hand, the more accurate a diagnosis or treatment plan can be. I designed Symptom Shark to help me keep track of my own health. My hope is that it can do the same for others.