Voices Across America

My Patient Story

Stephanie

State: Minnesota
Congressional District: MN03

Diseases

Genetic Disease, Rare Disease

Issues and Challenges

Stephanie has encountered: Access to Expert Providers, Copay Issues, Insurance Issues, Medicare / Medicaid Issues, Medical Records Access, Rare / Underserved Disease, Caregiving, Disability, Financial Assistance, Invisible Illness, Job Insecurity / Loss, Premium Payments, Prior Authorization, Social Security Disability, Step-Therapy / Fail First, Transparency in Health Care

My Story

My son, age 21 has Mitochondrial Disease. He was dx at the age of 6. At that time, the medical community wasn't prepared to learn or study his type of neuromuscular disorder, so we were told there was no hope and he would not live to be a teenager. No parent should ever have to hear that their child will suffer, and no treatment is available. Through that grief, I began searching on the internet for doctors who would know anything about his disease. I was fortunate to run across a parent chat group and learned of a physician on the east coast. We live in MN.

My Motivation and Inspiration

I am motivated to help my son, and others with him that have rare diseases because it is so isolating. No one wants to be the patient that stumps the medical team. We are sending people into orbit, and yet countless families have zero resources, support, or medical help.

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