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Despite the challenges, I’m thankful aHUS granted me a new life

Living with a rare and chronic illness is undoubtedly one of the hardest things I’ve ever done. Nearly dying in the hospital and spending almost two months in the intensive care unit was just the beginning. The experience changed everything in my life — but ultimately, it’s changed my life…

Grappling with the cost of healthcare with a rare disease

Several years ago, terms like “deductible,” “in and out of network,” “PPO,” “Medicaid,” “Medicare,” “Medigap,” “SNAP,” “prescription coverage,” and “disability” were thrust upon me suddenly and without warning. I had to learn them quickly to continue receiving lifesaving care. I was sitting in a hospital…

The day I tasted 2 types of IV fluids running into my body

My mouth was dry and my throat burned. It was becoming hard to swallow. I hadn’t been allowed to drink or eat anything for hours because I’d been admitted to the emergency room and was hit with a barrage of tests. A young and apprehensive nurse came in holding a…