Voices Across America

My Patient Story

Christine von raesfield

Christine

State: California
Congressional District: CA19

Diseases

Blood Disease, Bone / Muscle Disease, Chronic Pain, Genetic Disease, Heart Disease, Immune Disease, Mental Health, Neurological Disease, Rare Disease

Issues and Challenges

Christine has encountered: Access to Expert Providers, Access to Medicine, Medicare / Medicaid Issues, Medical Records Access, Rare / Underserved Disease, Disability, Financial Assistance, Gaslighting, Housing, Invisible Illness, Job Insecurity / Loss, Medical Discrimination, Social Security Disability, Step-Therapy / Fail First, Transparency in Health Care, Underserved Community

My Story

I like to describe my life as a series of unfortunate events. Whatever could go wrong, did; from last medical records, misdiagnoses, missed conditions and damage from medication‘s, I’ve experienced it all. Add to that, an immigrant mother, a working father with 2 jobs and 4 other children at home, my support system was not where I needed it to be.

But despite all of this, I’ve used my experiences to push for innovation and change for the individual patient and our rare disease community. As a Medicare recipient, I was given access to Stanford Hospital and enrolled in a pilot program called humanwide, a Precision medicine initiative in which I was given access to Pharmacogenomics and a partial genome sequencing. While some parts of the program didn’t yield many results, the precision medicine aspect of it uncovered more than I could have ever imagined and has changed my futures care and treatment.

As a patient advocate, I’m trying to advance the conversation and debate around healthcare issues, and to bring the patient persective to the table as a stakeholder. I’ve used my experiences as a starting point and hope that my journey will provide the answers that I and so many others need. I am a huge proponent for digital rights and am working to educate and empower the patient communities around their data and the value that it represents.

My Motivation and Inspiration

All of my life I have felt like a burden. Living with chronic conditions that rendered me permanently disabled, means my options in life have been limited. My motivation really has nothing to do with myself, but really to empower others. To show people like me, who live with invisible illness, who are on disability or who just feel 'less than', that they have a purpose and a meaning in this life.

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