For me, CareSync is so much more than a job I go to each day. It's a project built with passion to help families like mine manage the moving parts that are inevitable when taking care of an ill relative.
Getting the Diagnosis
It is a morning that I will never forget. June 18th at 8am. It came after a very long week of waiting. What originally seemed like a pesky rash had obviously become much more. Even though the doctors thought it was psoriasis, deep in my gut I knew that it was much, much more. As we waited for the biopsy results for a long 7 days, I went back and forth between convincing myself that it would be psoriasis and freaking out that it might be something much worse. When we arrived in the exam room, we were told that the biopsy results weren’t back yet. The nurse assured me that the doctor had noted that she was almost sure it was psoriasis. As we are driving away, I got a phone call to come back immediately. I knew at this moment that the news would not be good.
As the doctor carefully tries to tell me the biopsy results, she keeps saying this word that I cannot quite understand. Now, it is a word that rolls off my tongue, but at that moment Juvenile Dermatomyositis was as foreign and scary as can be. As the doctor got tears in her eyes telling us about this rare disease that affects most of the body systems, I because very protective of my then 11 year old daughter. She is looking at me with this terrified look because she knows something is very wrong, and she is scared. I didn’t dare ask more details in the exam room as I had no idea what the answer might be in front of my daughter. Tests were ordered, and we were sent to the pediatrician to verify the medications that the doctor ordered were appropriate for her.
I started googling right away and of course saw the “death” word in many of the articles. This was not the encouragement that I was looking for. I called a dear friend and asked him to be looking it up in his medical journals, and he started reading to me as I was driving. In the next four weeks, I am pretty sure I googled Juvenile Dermatomyositis at least 1,000 times. I read everything I could get my hands on. My daughter’s doctor had never seen a case of it. Every physician friend I know had never had a case of it. We were referred to a pediatric rheumatologist who couldn’t take an appointment for 3 months. THREE MONTHS!?!?! What do we do in the meantime? How do I know if something is wrong? How do I know if the steroids you are giving her are helping? How do I know if they are not? Three months?
It was that week that I found the Cure JM organization, a non-profit dedicated to finding a cure for Juvenile Myositis, which is a rare autoimmune disease that affects about 5,000 kids in the US. Without this group, I am not sure how we would have survived the almost 3 years since diagnosis. This group of parents work tirelessly to raise awareness, provide support for families, and to fund research. Most of us feel that without CureJM, there would be little to no research done. The fundraising efforts have helped create three centers of excellence for research and treatment, and it has even funded the first book on Juvenile Myositis for patients.
Managing the massive amounts of information
I have a nursing background and over 15 years working with healthcare technology, yet I struggled to track my daughter's symptoms. Repeatedly, I asked myself, "How can it be this hard?" I tried every application that I could find, but nothing truly helped in the day-to-day management of a chronic condition.
I often felt overwhelmed because I needed help managing her care. I needed a good way to keep my family up to date, as I relied on them for help. I struggled to manage the hundreds of pages of paper records, and to keep her multiple specialists informed in real time. CareSync was born from the passion to help families avoid these frustrations.
CareSync is a family health record to collect, manage, and selectively share your healthcare information. You are in complete control of your health record. Your information is tied to industry-standard terminology, which makes it more accurate, and incredibly easy to share with providers and other caregivers.
CareSync focuses on managing your visits with notes and to do lists, creating (and completing!) tasks, tracking data, and being able to share the complete story of your health story.
We are excited for the months ahead. Upcoming releases include social layers, communities of other patients and caregivers who will share real world examples of how to live with chronic conditions, and lots of new features to make managing and sharing your healthcare even easier.