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Rosemary’s health concerns date back to 1984, when she was diagnosed with lupus and interstitial lung disease. In the decades since, she has been diagnosed with several other conditions, making each year more complex and challenging than the last. Looking back on her…
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Zoann managed asthma symptoms for nearly two decades only to find that the doctors she saw over those years had never truly seen her. They had never looked beyond her diagnosis to see that she had multiple health issues going on.  When Zoann…
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Pain has shaped Pam’s life for decades, both physical and mental. Others’ pain, too. She has served as a caregiver for multiple family members and in more recent years, after being diagnosed with rheumatoid arthritis and other conditions, shifted focus to her own…
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member art MSA Feature

In 2021, Cathy sent us her story about her harrowing experiences leading up to, and following, a multiple system atrophy (MSA) diagnosis. We checked in with her before publishing it, and in the time between, she had forgotten exactly what she’d shared with…
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walking in nature Feature

For many years, Megan’s multiple physical and mental health conditions have proven difficult to treat with standard medications. As a result, she has found alternate ways to find relief and peace. Here she shares some of what she has experienced and how she’s…
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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.

We asked Health Stories Project community members living with age-related eye diseases if they had any tips for day-to-day life with low vision. These are the top 10 tools and tricks they recommended:

We asked the Health Stories Project community about their personal experiences with cancer — particularly the hardest parts — and they didn’t sugarcoat it. It’s challenging sometimes in ways they couldn’t anticipate.

Have you ever watched a TV show or documentary that got your health condition totally right (or totally wrong)? We’d love to hear about it! In the meantime, if you’re looking for something to watch on Netflix, these health stories (both fictional and non-fiction) may spark your interest. Enjoy!

Fear of disease progression is an understandably frightening thought that affects hundreds of thousands of people in the U.S.

We asked people living with multiple sclerosis what they would say to someone who fears progression of their MS. While the responses are from people with MS we feel they have the power to impact LOTS of people across many conditions.

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