Voices Across America

What is the next step for a disease with no cure?

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Rebekah P.

State: Wisconsin
Congressional District: WI07


Cancer, Gastrointestinal Disease, Genetic Disease, Mental Health, Migraine, Rare Disease

Issues and Challenges

Rebekah P. has encountered: Access to Expert Providers, Access to Medicine, Copay Issues, Medicare / Medicaid Issues, Rare / Underserved Disease, Abuse (Mental, Physical, Elder), Disability, Financial Assistance, Social Security Disability

My Story

As a 12 yr old in middle school, I underwent chemotherapy for B-Cell lymphoma cancer. This cancer was part of having had a kidney transplant that summer, with my mother as living donor. I became one of about ten to twelve transplant patients who get cancer due to anti-rejection medication related to their kidney transplant.

My transplant was part of my ongoing life journey with the rare disease, cystinosis. Cystinosis is a lysosomal disorder that affects the transport of protein out of one's cells to other parts of the body. My cells crystalize the hoarded protein which causes breakdowns in organs like the kidney, pancreas, liver, muscles, brain and eyes.

As an adult living with this disease I find no true recourse medically and psychologically for my ongoing chronic journey. While there is no cure for cystinosis yet, there is no real measures to update the noxious treatment currently in use for my disease.

Every year I face losing access to the current drug cysteamine, and every year I have to make sure my plethora of doctors are covered by my state and employer-based medical insurance. Access to housing and multiple appointments to keep me healthy is my full time job.

Some peers and friends of mine started a non profit for adults with cystinosis called Next Generation of Cystinosis and we hope to better educate the challenges specific to aging with this once childhood rare disease.

My Motivation and Inspiration

My motivation is those aging with my rare disease. I aspire to educate and make aware that half of the people with rare disease are adults trying to live their best life.

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