1:20 - 1:40 pmSaturday, September 17
LK 102
Patient case study: My data. My research. My results. How I used my own data to create a precision medicine approach to my autoimmunity.
LK 102
Patient case study: My data. My research. My results. How I used my own data to create a precision medicine approach to my autoimmunity.
ePatient Scholar
I love my rheumatologist. She is caring, she’s gentle, she takes the time with me to talk through any issues I need. But the problem is that the health system that she works in does not provide focused,... Read more

Description

I love my rheumatologist. She is caring, she’s gentle, she takes the time with me to talk through any issues I need. But the problem is that the health system that she works in does not provide focused, individualized care for my specific needs. I’m ushered in, usually have to wait forever, and then given the basic drugs, blood tests and care the majority of the patients which walk into that office are given. 

When I first started going to my rheumatologist, my CRP and SED rate levels were sky high! Methotrexate was shoved my way and a few months later Humira. These drugs were promised to help manage my inflammation and get my body calmed down. 

Did they do that? To a certain extent. Sure, I started to feel a bit better, but they didn’t address my fatigue. My malaise. My nauseousness. My bone aching pain. My general ability to lead a normal 20-something life. 

I’d go back into my appointments with my doctors and the same thing was always said. Oh you need to be more active, then you’ll feel better. Just give the meds more time, then you’ll feel better. You have autoimmune issues, you’ll probably never feel 100% better. 

I knew there had to be a better way. I knew there had to be more to the story than they were telling me. 

I started pouring over my own medical record. Since I was a baby, my Mom has kept a record of all my doctors appointments. I started reading over the entries – chronic ear infections, antibiotic after antibiotic, chronic migraines, test after test for stomach issues, 1 knee surgery, then another, then another, then another and another. I started seeing common themes and started thinking how there was no way all of these things WEREN’T related. The human body is AMAZING and so interconnected. 

I started to look at all of these “little”, “isolated” issues as dots on a graph of my health journey. I started to be able to connect dot after dot after dot and by the end of my reading, I had so many post-it notes stuck to the pages and questions that I NEEDED to ask my doctors. I started making copies of lab results, surgery notes, doctors notes, etc and had a huge package to present to my doctors. 

My rheumatologist, my pain doctor, my orthopedic, my psychiatrist, my blood doctor, my acupuncture doctor – they all seemed interested, and shocked that I had taken the time to mull over my health records like I had, but since the system isn’t really setup to help me with my precise case, they offered me a few words of encouragement and really didn’t give me much more than that. 

I was on my own. I knew I had to field my own team of doctors who would be willing to work with each other, who would be willing to listen to my research and ideas, to really work on me on an individualized level. 

I set out to build that dream team of doctors. As I did that, I started collecting more data on myself. How could I impact my condition, how was my body sending me signals, how could I use the data I had at my finger tips to really influence my health? 

After doing research on my own, I realized that I needed to work on calming my immune system down – whatever, however that meant. I learned that 75-80% of the immune system lives in the gut, therefore I started first looking at my diet. I removed trigger foods and started doing different iterations of an elimination diet. First, looking at the common triggers, seeing how those affected me and then shifting my sights on lesser known triggers. It was amazing to me to see the foods that I was eating on a regular basis were really causing me problems! It was insane. Foods that I looked to for comfort were actually invoking an immune response in my body. I kept spreadsheets, I used phone apps and journals and tracked so much data on myself. 

Then I looked at other things – supplements, detoxing from beauty products, calming my body with yoga and meditation – every and any bit helped. And came up with plan on my own for a regiment that could help me personally deal with my psoriatic arthritis. 

I’ve been on this journey now for a few years, and using the data that I have, I’ve been able to get my CRP levels and SED rate down to levels that can hardly be picked up by testing. I’ve shocked every one of my doctors. I’ve come off of all of the meds I was taking (which at one time was 9 different pills and 2 different injections – one weekly and one twice a day.) 

Because I felt like I didn’t have precision medicine at my disposal, I took it in my own hands to create my own precision medicine plan for myself. 

It worked for me because I’m motivated, I take initiative, I WANT to live my best life. But, patients shouldn’t be left to have to fend for their own. Two patients may have the same disease, but their illnesses affect them completely different. Our healthcare landscape needs to be one that promotes healing on an individualized basis, not a generalized basis. 

I have many different examples of data that I used to help crack the code of my autoimmunity. From my mom’s notes from when I was little, to keeping test results and surgery notes, to getting tests done and looking over them myself, to the ridiculously elaborate excel spreadsheets I kept on myself (I used to be a consultant, ok?) – there are many points that I can make about how using my own data truly helped me enhance my own health. Had I not kept my own files, tracked my own data, and been empowered to do so, I doubt I’d be in the health state I’m in today. 

This presentation would talk about my health journey and how having access to my data, using my data, and fielding my “dream team” or doctor has helped me get to where I am today. My case study proves that we need precision medicine to combat these complex health issues. My main objective would be to show the Medx audience what I used to help tailor my plan, how each and every patient needs someone on their side to help them do the same and end with the thought of “How might we offer our patients this opportunity?”. 

I'm currently on long term disability from IT consulting with Deloitte Consulting. To fill my time, and keep my spirits up, I maintain my blog, chat with other patients, and am currently enrolled as a student at the Institute for Integrative Nutrition. My goal is to create a health coaching practice, for autoimmune patients, helping my clients live their best life possible! I'm unsure if I will be able to go back to my previous job once I am able, but I know that I will pursue something along the lines of IT and heathcare.

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