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.
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
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
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
Life with a serious health condition can be difficult. We have found that some individuals find comfort hearing from others living through similar situations. Our Health Stories Project community members living with deep vein thrombosis (DVT), atrial fibrillation (AFib) or pulmonary embolism (PE)
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,
For years following the birth of her son, Jolie experienced pain in her core and difficulty breathing — and medical professionals could find nothing wrong. The truth, eventually discovered after another visit to an emergency room, was that she had a rare and
Individuals living with schizophrenia may find it important to have a support person, group or resources. Support can take many forms and may range between a significant other, family members, friends, psychiatrists, therapists, online and in-person communities, hotlines and social media. Unfortunately, some
Hobbies don’t just help us pass the time. These enjoyable activities can have mental and physical health benefits as well. Three Health Stories Project members — Jolie, Kanani and Tyler — share how their creative pursuits help them manage their health, from providing
Sometimes revealing an especially personal or difficult matter to others can change everything — for the better. Saying that is one thing, however, and doing it is something altogether different. Here Matt shares his life-changing decision to reveal his human immunodeficiency virus (HIV)
Eczema and various allergies have been with Celeste since birth — and she said she is in menopause today. Here she candidly recalls the challenges she has persevered over the decades and how the stresses of life have intertwined with the shifting intensity
Brad admitted to putting off medical care when he probably needed it earlier in his life. After a heart attack in 2018, he realized he should take a more proactive approach. Since then, he has dedicated himself to staying active and maintaining his
Eczema, also known as atopic dermatitis, is a health condition that makes skin red and itchy. It is most common in people who have a family history of the condition and although it typically develops in early childhood, it can occur at any
Graft versus host disease (GVHD) is a condition that may occur following a transplant using donor bone marrow or stem cells. More than 20,000 people every year are diagnosed with GVHD. The chances of developing GHVD and its severity may vary between individuals. The
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
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.
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
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
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 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
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
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
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
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
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
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.
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
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,
“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
When Michelle Rathman tells her personal story of how a successful public relations expert shifted her focus from representing bestselling authors to advocating for rural healthcare, the audience listens raptly. Hands always shoot up when she asks if anybody else had a medical
John Linnell knows how to put people at ease. When asked how he’s doing, he delivers a humorous response with impeccable timing. “If I were any better, I’d be twins,” he says, chuckling a little at his own well-worn bit. “But then I’d
This is the second of two articles about being a care partner to someone with terminal cancer. Click here to read Part 1. If you would like to share your health experiences, please sign up here. Tiffini Joseph lost her loving mother to lung cancer in
When it comes to fighting cancer, the timing is never ideal, but sometimes it strikes at the worst possible moment. Molly MacDonald had just endured a financially devastating divorce and was about to transition to a new six-figure job that would help her
Recently, friends of Health Stories Project had the chance to ride along with members of an organization called Young Survival Coalition at their annual Tour De Pink charity bike ride. The Young Survival Coalition (YSC) exists to ensure that no young person faces
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
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
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
Life with a serious health condition can be difficult. We have found that some individuals find comfort hearing from others living through similar situations. Our Health Stories Project community members living with deep vein thrombosis (DVT), atrial fibrillation (AFib) or pulmonary embolism (PE)
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,
For years following the birth of her son, Jolie experienced pain in her core and difficulty breathing — and medical professionals could find nothing wrong. The truth, eventually discovered after another visit to an emergency room, was that she had a rare and
Individuals living with schizophrenia may find it important to have a support person, group or resources. Support can take many forms and may range between a significant other, family members, friends, psychiatrists, therapists, online and in-person communities, hotlines and social media. Unfortunately, some
Hobbies don’t just help us pass the time. These enjoyable activities can have mental and physical health benefits as well. Three Health Stories Project members — Jolie, Kanani and Tyler — share how their creative pursuits help them manage their health, from providing
Sometimes revealing an especially personal or difficult matter to others can change everything — for the better. Saying that is one thing, however, and doing it is something altogether different. Here Matt shares his life-changing decision to reveal his human immunodeficiency virus (HIV)
Eczema and various allergies have been with Celeste since birth — and she said she is in menopause today. Here she candidly recalls the challenges she has persevered over the decades and how the stresses of life have intertwined with the shifting intensity
Brad admitted to putting off medical care when he probably needed it earlier in his life. After a heart attack in 2018, he realized he should take a more proactive approach. Since then, he has dedicated himself to staying active and maintaining his
Eczema, also known as atopic dermatitis, is a health condition that makes skin red and itchy. It is most common in people who have a family history of the condition and although it typically develops in early childhood, it can occur at any
Graft versus host disease (GVHD) is a condition that may occur following a transplant using donor bone marrow or stem cells. More than 20,000 people every year are diagnosed with GVHD. The chances of developing GHVD and its severity may vary between individuals. The
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
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.
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
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
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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