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
We love to tell stories. And as storytellers, we know sometimes we just need to get out of the way and let you tell it. You own your story, and sharing it with us and the Health Stories Project community can be the bravest thing you do.
Below you will find stories we’ve written or curated and stories taken directly from our community. They might be raw and unfiltered, but we feel it is our members’ truths we need to honor and respect.
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
Lisa and Matt are Health Stories Project members from Austin, Texas that believe their community made the difference when Matt had an unexpected hospital stay related to colon cancer. They allowed us to visit them (socially distanced!) to capture their story. Please join
Black Health Matters Providing health solutions for the mind, body and soul. A resource for health and wellness within the African American community. Website: https://blackhealthmatters.com/ Twitter: https://twitter.com/BHMinfo Black Women’s Health A national nonprofit dedicated solely to the health & wellness of Black
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
Community member, David G, sent in this story in response to one of our story requests. This is our first story about Moebius Syndrome., a rare neurological condition that researchers estimate affects 1 in 50,000 to 1 in 500,000 newborns. It can be
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
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
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
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
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
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
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,
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
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,
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.
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
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