Kate’s Take on Rare Care
— Kate Manger

Kate Manger lives near Chicago with her husband and three children. In 2016, her middle daughter, Caroline, was diagnosed with late-onset Pompe disease and began enzyme replacement therapy within her first year. Shortly after Caroline’s diagnosis, Kate’s oldest daughter, Evelyn, was diagnosed with alopecia universalis. Kate’s mission is to be approachable and helpful to those experiencing the world of rare for the first time. She is also a patient advocate for her daughters and works to ensure the diseases they have do not define them or limit their daily lives.

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It’s hard on my child when home infusions interrupt summer fun

Tomorrow, my daughter Caroline has an infusion. If you asked her about her summer excitement, she’d talk about the pool. The weather has been beautiful, and we’ve taken full advantage. In these first days of summer, she splashes with friends, races barefoot across the deck, begs for “just five more…

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My role as a caregiver includes advocating for my child

When my child was diagnosed with Pompe disease, my whole world changed in an instant. Suddenly, I wasn’t just a parent; I had to learn how to be a researcher, a scheduler, an insurance negotiator, a medication manager, and, most of all, an advocate for my child. I always…

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Why taking the time for mental health as a caregiver is important

Talking about mental health isn’t the easiest thing to do. Sharing our feelings can be uncomfortable, and asking for help may seem like exposing a part of ourselves we’d rather keep hidden. I’d always shared my feelings openly and leaned on family and friends. For a long time, I thought…

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From low probability to unique, we redefine our rare disease family

You get the call. It’s rare, they say. Probability is low, statistics meant to comfort. They assure you this doesn’t happen often. But sometimes, despite all the reassurances, rare things happen anyway. When it happened to us, I immediately wondered what I could have done differently. I blamed myself for…

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The mental load I carry as a mom and caregiver

Being a mom comes with a heavy mental load. I constantly have a list of tasks running through my mind — all the work I need to do to manage my family’s life. I’m not just thinking about those tasks, but also making plans, remembering events, and carrying the tasks…


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