Beth lives with polycystic kidney disease (PKD) Feature

In 1996, Beth was diagnosed with polycystic kidney disease (PKD), which causes cysts to grow inside the kidneys. Over time, this genetic disorder affects the organs’ function, causes chronic kidney disease and leads to kidney failure. Beth’s evolving response to living with PKD…
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bipolar disorder

Jamie, who has managed multiple mental health conditions — and HIV — for many years, reflects on the importance of support and self-care. Growing & Learning Growing up, I knew I was a little different than other kids. When I was a teenager,…
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Isabel M. from Chaps, New Mexico is living with Hypermobile Ehlers-Danlos syndrome, or hEDS. At the age of 22, she’s already seen a lifetime of diagnoses. She’s spent half of the past 2 years recovering from 5 surgeries and at the time of…
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positivity is my super power

Heidi P. from Ohio, sent us the following story. Like 3,000 other community members, Heidi has multiple sclerosis (MS), and was diagnosed 29 years ago in 1992. Her MS story reflects what so many  others who have chronic autoimmune conditions have told us….
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Community Insights Are Valuable Our site will never be a place to come and get every fact or the latest piece of news about any health condition. However, we will continue to share results from surveys you generously respond to. Last year, we…
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We’re all experiencing this pandemic both together and in isolation. We checked in one last time in 2020 and asked how you all were doing. Some of the questions were new, and some were identical to questions we asked last spring so we could…
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In Dallas, Texas, in the late 1970s, Gail Henkin was the youthful, earnest subject of a photoshoot. She smiled. She gazed at the camera. She felt a flutter of pride. Despite her grandmother’s death from lung cancer, she held a cigarette—and many poses—as…
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What happens when you develop a serious autoimmune condition at a young age? For young people living with Hidradenitis Suppurativa (commonly called HS), it can mean embarrassment, pain, confusion, and the frustration that comes with limited information. While the average age of onset…
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Taryn, Jessica and Jacquie portraits

Taryn J. age 26, was a natural homebody before a pandemic struck Washington state, and now staying at home is enforced by law. Jessica Cannon, age 27, commuted to Seattle by train for almost an hour to reach her job as an accountant,…
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Right now, the world is a scary and uncertain place. From disrupted treatment, lost work and wages, healthcare rationing, social isolation, and subsequent depression, the coronavirus (COVID-19) is disrupting the lives of every person in the U.S. (and the world!). These issues are…
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When Health Stories Project invited readers to share their experiences with lupus, we received a lot of responses, which ranged from humorous to heartbreaking. Lupus, a long-term autoimmune disease in which the immune system goes haywire and attacks healthy tissue, affects everybody differently…
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Flower Lungs

I remember vividly when a close family member was hit by an asthma attack that was exacerbated by dust and mold in a large arena filled with horses. When we bought the tickets, we didn’t think about how a simple show could lead…
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“I have fits of uncontrollable laughter and it’s not fun or funny.” That’s how Jennifer explains life with pseudobulbar affect (PBA). Wendy has the same condition and describes her experiences: “It’s frustrating because you have no control over [laughing or crying]. They occur…
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Meet Amy Amy Gietzen from Buffalo New York has been living with Systemic Scleroderma for 18 years. Her insights and wisdom come from living with this chronic condition for half of her life. Like other autoimmune disorders, systemic scleroderma occurs when the immune…
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At Health Stories Project, we’re fascinated by stories related to health and medicine, from the personal to the deeply profound. While this blog often focuses on sharing your stories, we also like to occasionally give a shout-out to some of the interesting books…
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Meet Marty Marty has been a traumatic brain injury (TBI) survivor since 1982. His accident occurred almost four decades ago, but he’s still working hard on his recovery all these years later. He’s made incredible progress and has a positive attitude that no…
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Podcasts are a uniquely intimate and wonderful experience. Having someone in your ear, talking to you, is lovely. This is especially true because many peope choose to listen to podcasts when they’re working, cleaning, or doing something when they’re alone that they’d rather…
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Nikki Albert has coped with chronic pain since she was a kid, when joint hypermobility syndrome left her with aching knees and insomnia at just eight years old. As a young adult, she was diagnosed with fibromyalgia and migraines. Now in her early…
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We recently shared the trailer for “Five Feet Apart” with people in the Health Stories Project community who are living with cystic fibrosis and asked them to share their initial thoughts about its accuracy and impact on their community.

Cancer is different for everyone, and rare cancers like AML can be even harder to cope with, as patients often must seek out testing, specialists, and undergo intense treatments. This post in honor of Health Stories Project member, Coel Peach continues his mission of boosting the experiences of people living with this condition.

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