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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I’ve had to learn how to keep living in the waiting room of rare disease

We’re back in the waiting room at the geneticist’s office. Since my daughter Caroline was diagnosed with late-onset Pompe disease at birth, these appointments have become part of our routine. Today, she’s 7 years old and kneeling on a seat two chairs away from me so she can look…

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Home infusions take us to as close to normal as I ever thought we’d get

When my daughter Caroline was diagnosed with late-onset Pompe disease as a baby, we started enzyme replacement therapy before her first birthday. I remember spending what felt like endless hours at our children’s hospital, meeting new doctors and nurses, going through test after test. At first, it was…

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Some decisions don’t feel like choices in our Pompe disease journey

For me, one of the hardest parts of parenting a child with Pompe disease hasn’t just been learning all the new medical terms or keeping up with appointments. It’s the decisions. The ones that don’t have clear answers. The ones that keep me up at night, long after the…

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My journey of learning how to explain Pompe disease to others

When my child was diagnosed with Pompe disease, I realized pretty quickly that understanding the condition was just one part of what we faced. The other part was explaining it to everyone — family, friends, teachers, other parents at the playground, even strangers who noticed something and asked questions…

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Part of our journey was learning how to talk to our children about Pompe

When a child is diagnosed with Pompe disease, they’re not the only person affected. The disease changes everything for the entire family. Suddenly, schedules and priorities shift. One of the hardest things for me as a parent was figuring out how to talk to my other children about what…

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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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