What are you savvy about?
I’m savvy about and living with Central Pain Syndrome, Stiff Person Syndrome, Grave’s Disease and Hyper-coagulation.
What is one of your most memorable advocacy experiences?
Most memorable was advocating as a caregiver for my husband back in 1987 by trying to track down and locate the doctor/surgeon who had saved his leg in 1976. The Dr had retired and moved out to Arizona from Florida. Tracking him down way before internet isn’t as easy as nowadays. I was able to locate and get written reports from him so that we could progress with treatments for my husband.
What's an example from your own life of how healthcare is not user-friendly?
Having to call, wait on hold and speak to Dr office, pharmacy, health insurance and such all while dealing with a 24/7 chronic pain illness.
Why do you think patient insights matter?
We are the boots on the ground and can provide a wealth of knowledge of what it’s like to live 24/7/365 with certain conditions and incurable diseases.
What excites you about being a Savvy Co-op Member?
I think it’s wonderful to be a part of a company that offers payments for participating in clinical trials and other events they offer. Along with allowing everyone to be a buy-in co-op member.
What hidden talent do you have that others don’t know about?
If I have one, it’s hidden from me as well : )
If you could give one piece of advice to people just getting started sharing their healthcare journey, what would it be?
Don’t be embarrassed about sharing. That one thing that you share will touch someone else and let them know they aren’t alone in that very same thing.
Which term(s) do you prefer to describe someone who utilizes healthcare?
Patient, Person with disability, Consumer, Citizens