How I Can Help
Areas of advocacy include, but are not limited to, medical navigation, insurance appeals, coordination of care, improving communication between clinics/providers, adaptive tools for day to day management of conditions, direct advocacy in clinical and emergency room settings. I have extensive experience with chronic diseases, rare diseases, genetic conditions, pediatric and adolescent care, cognitive and developmental conditions. I am familiar with both the process of seeking diagnoses as well as disease management. I strive to help build strong, open communication between patients and their providers, reduce barriers to accessing care, and to bridge the gaps in care between providers and specialties.
Important Information About Me
- I offer a FREE Initial Consultation
- I offer TeleAdvocacy Service
- My geographical area of practice is I work mostly remotely. Only limitation is clients must be within the U.S.
My Survivor Support Advocacy Qualifications
I am a survivor of Fibromyalgia, Lupus, Sjôgrens, Ehlers-Danlos Syndrome, PTSD
I began in advocacy when my youngest daughter was born with several rare genetic conditions and a congenital condition. Over time, I found that I had a knack for finding and remembering information and resources, and organically began providing those to families or individuals I would meet who experienced similar barriers or abuse in the medical system that I or my family had. This led to advocating pro-bono for years, through providing information and resources and through direct advocacy, prior to entering a masters program for Health Advocacy and establishing my own small advocacy business.
Why I Became A Professional Health Care Advocate
My introduction to our health care system was one I was completely unprepared for. When my youngest child was born with multiple rare conditions, including one that is life threatening and another that later led to the development of a second life-threatening condition, it began my path in advocacy. Instead of being given support and information, I found that my concerns were dismissed because I was a young mom with a spouse on active duty. I was dismissed as an overreactive parent, misled about testing that should have been done, and more. And when I began to realize I had my own health issues to address - ones that had been normalized for so long that I already questioned them when I started seeking care - I was told any number of things aimed at minimizing or dismissing my symptoms and their impact in my life, to include accusations that I was faking symptoms to have my spouse brought home from sea. It seemed that the more informed I was, the more likely I was to be accused of drug seeking, told it was “just” psychological, that it couldn’t possibly be as bad as I said, that nobody has pain every single day, and so forth.
Now, patient support groups are commonly used but at the time these resources were not readily available, particularly for rare conditions. Instead, I found support and information in what at the time seemed the most unlikely of places - from the random mom at the grocery store who recognized a mom and her child who were struggling in a way that was familiar to them, that decided to stop and share a resource that helped them. From para-educators in my daughter’s classrooms, and any number of similar scenarios. Over time I realized that I had become that random mom at the grocery store, offering resources to a young parent, or offering the person that would confide a medical struggle with me information on how to navigate a difficult situation or need in the medical system.
For a time, I considered it giving back to a community that had, piece at a time, helped validate my own struggles in making sure my daughter, and then myself, had the care we needed. But as I gave back, I found that not only had I built a wealth of knowledge in resources and developed an important skill set for my family and myself, but because of the complexity of care and the challenges of navigating rare disease diagnoses and management I had developed a specialized and much needed skill set that is invaluable for patient care. I also learned, through meeting innumerable patients and families, that my experiences were not the outliers but were happening every day to patients across the country, in every type of medical setting.
Today, I am a second year graduate student at Assumption University in the Health Advocacy masters program, work as a volunteer for a national health advocacy organization focused on education and resources, have spent time volunteering at a local children’s therapy unit, and work directly with patients and their families through my independent advocacy practice with 19 years of experience in health advocacy.