sibling mistrust Feature

Lisa was diagnosed with type 1 diabetes in her twenties and experienced a life-changing heart attack two decades later, in 2013. Here she recalls the difficulty of her sister’s lack of support after her heart attack — and celebrates the power of a…
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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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multiple myeloma Feature

Richard was diagnosed with multiple myeloma, cancer that develops in plasma cells, in 2014. Here he reflects on a few aspects of his experience with this condition with no known cause.   Onset of Symptoms [I sought medical help after a] steadily increasing…
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Dan “Dry Dock” Shockley is a Health Stories Project member from California who, after retiring from the military and surviving hereditary colon cancer, is the definition of a warrior. He recently responded to our Shared Experiences story request about people sharing important experiences…
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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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Opportunity

If you live with an invisible illness you know exactly how hurtful worlds can be even if they come from someone who has good intentions.

 This story was written by a community member, Cindy B. She responded to one of our story requests about life with cancer.   Two years ago, a growth in my pulmonary artery was discovered by accident.  Since then, a diagnosis of fibromuscular dysplasia and…
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MacKenzie is a Health Stories Project member from Kentucky who is most passionate about changing the way people see folks with multiple sclerosis, “They tend to focus on all the things we can’t do instead of all the things we can.” She recently responded…
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For Art, who was diagnosed with HIV in January 1989, watching the COVID-19 pandemic unfold has been reminiscent of his experience living through the AIDS epidemic that ravaged the US in the 1980s and 1990s. “I grew up in the epicenter of HIV…
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Opportunity

Meeting someone who understands what you’re going through can boost your mood, give you ideas or inspiration, and makes a huge difference when you’re feeling isolated or alone. This story template is designed to help you share about a time you’ve connected with someone about a shared health experience.

Dr. Pineda in a wheelchair, smiling

As concerns about the coronavirus continue to mount, one organization is reminding governments and communities not to forget about people with disabilities. World Enabled, founded in 2003, aims to build inclusive societies for people with disabilities and older persons. With COVID-19 continuing to…
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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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Taking the time to listen and care for your body is a critical life-skill. This is true for everyone, but especially when you’re living with chronic health conditions.  Sylvia of Virginia is living with lupus SLE, type 2 diabetes, rheumatoid arthritis (RA), depression,…
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Jae knows a thing or two about change. A passionate writer and volunteer in Chicago, he discovered he was living with multiple sclerosis (MS) in 2019. We would like to thank him for sharing candidly about the first stages of this life-changing diagnosis….
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Allyson's Art Journal

This description of healing and personal growth was written by community member, Allyson L. She responded to one of our story requests. Please leave your words of encouragement and inspiration in the comments below. I’ve always been crafty. I took the basic art…
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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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Putting Stigma To Bed Featured

Rachel from Dallas, Texas lives with Narcolepsy and is determined to flip the script when it comes to invisible illness. She is especially concerned with fighting stigma surrounding life with narcolepsy and echoes what many with this condition say, “[there are movies where…
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“All it took was one AL Amyloidosis survivor story for me to realize that I could also survive this challenge”

 This story was written by a new community member, Tove J. She responded to one of our story requests saying she is open about surviving a rare incurable disease “because other patients have shared their stories and they gave me hope.”  Please thank her for…
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Lisa is a high school special education teacher living and working in Holmen, WI. While a job in education can be challenging in it’s own right, Lisa also lives with a painful and debilitating autoimmune condition called ankylosing spondylitis (that’s pronounced ank-kih-low-sing spon-dill-eye-tiss)….
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Beth Morton was in her mid-30s on the cusp of finishing her PhD when the chronic migraines began. At the time, she was no stranger to debilitating migraine attacks — she’d been having them a couple of times a month for two decades….
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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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Multiple myeloma survivor Sandy, says that “fighting this alone without support is a hard, rough road.” This is true not only for survivors but for family and caregivers as well. If someone you love is dealing with cancer you may feel overwhelmed, helpless,…
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