What are you savvy about?
I am savvy about rare and complicated diseases. Since the age of one, I have had numerous traumatic brain injuries including fracturing my forehead.
I have had the rare disease Mollaret's meningitis (aka recurrent aseptic meningitis) since twenty one when I had my first hospitalization with viral meningitis during the sheriff's academy. My second hospitalization at thirty two was when I was officially diagnosed with it and realized I had been having complications from it since the first time.
At age thirty eight I began having many neurological complications that we believe are related to complications from my rare disease. We believe some of them may be signs of CTE (Chronic Traumatic Encephalopathy) and I meet the criteria for ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome).
What is one of your most memorable advocacy experiences?
After officially getting the name of my rare disease, I was able to locate a few people in the world who also had it. We talked about needing a place to be able to share our experiences, so I started a Facebook support group. The support group started growing and it was clear we need to get the word out about our disease more, so I founded the Mollaret's Meningitis Association. It was a scary idea starting an organization on my own, but I quickly found help and we are now an official nonprofit in the US supporting patients around the world.
What's an example from your own life of how healthcare is not user-friendly?
I have found through my life of navigating the healthcare system that is not geared towards the patients and helping make their lives easier. It is very clearly focused on the healthcare companies and profits.
I am just now starting to have a couple doctors communicate about my care, but I have experienced that most doctors refuse to communicate with others and only want to deal with their specialty. I have to try and describe what other doctors have communicated with me to other doctors, and then they don't really believe what I am telling this is true.
We need the ability to have one place where everyones records are in one place that the patient can use to give access to any provider they need to for treatment. That allows the patient to own all their data and get accurate information to any/all providers.
We also need doctors to be more willing to work as a team to help those with chronic/complex diseases instead of patients having more stress on them to do it.
Why do you think patient insights matter?
Patients are the ones who live with their conditions every second of every day. They are the ones that have the best and most accurate information about their condition. I don't care how much doctors have studied something, it doesn't compare to the experience a patient has in living with their disease. They need to listen to us and trust what we are telling them. Patients get dismissed too much these days and it is harmful to us.
What excites you about being a Savvy Co-op Member?
I really love the idea of being able to share my experiences with my conditions with those trying to help us understand/treat those conditions. I believe it will allow for quicker times to treatment and diagnostic criteria. I also like that it allows us to be paid for our insights instead of participating for free.
What hidden talent do you have that others don’t know about?
I used to be able to play the drums pretty well until my neurological complications arose. Now I can play a little, but my coordination has really gotten bad.
If you could give one piece of advice to people just getting started sharing their healthcare journey, what would it be?
Don't be afraid to open up about what you experience as a person. You will be surprised how many people can relate to what you are going through.
Which term(s) do you prefer to describe someone who utilizes healthcare?