There are more than 7,000 rare diseases registered with the National Organization for Rare Disorders and while each is unique, there are many commonalities that unite rare condition patients, families, caregivers and supporters. In the spirit of raising awareness of rare conditions, we…
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Everyone who lives with pain has an important story to share. We are looking for people who either have a current opioid prescription and are concerned about overdose or those who have witnessed or experienced a prescription opioid overdose. You may even qualify for a special project that includes travel.
If you have experienced a heart attack, stroke and/or high cholesterol, you may qualify for a special volunteer project that includes travel. Take our survey to learn more and find out if you qualify.
Colorectal cancer is the 2nd leading cause of cancer death among men and women combined. Sadly, 60% of colorectal cancer deaths could be prevented with screening. If you have ever been screened for colon cancer (no matter the result) you may qualify for a special project!
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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Dupuytren disease is one of those things you never notice until you know about it. The slow-progressing hand condition, which can cause the fingers to permanently contract in a bent position, afflicts millions of people in the U.S., especially those over 60. Despite…
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Caring for someone with any chronic health condition is an experience that is hard to relate to unless you’re going through it. Resources and support for caregivers are often hard to come by, friends and family don’t often understand, and treatment can be…
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If you have experienced a heart attack, stroke and/or high cholesterol, you may qualify for a special volunteer project that includes travel. Take our survey to learn more and find out if you qualify.
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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Todd Spurrier has logged an incredible 53,000 miles on his Ducati to raise awareness for colorectal cancer screening. He meets and photographs survivors and says , “I carry a piece of each survivor in my heart on every mile. They are my fuel.”
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.
Not even the rudest of trolls can stop Tinu Abayomi-Paul a patient activist who lives with cancer and multiple disabilities. She spends her time creating helpful resources for others and speaking out about chronic illness, civic duty, and life as a black woman.
Patient advocate Josh Robbins is witty, fun, and super candid. He says, “My decision to disclose on social media that I was living with HIV was because I had the weight of the world telling me to do it. I felt safe enough. It was right for me.”
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.
Among the many issues that affect women globally, from the poorest countries to the richest, healthcare is one of the most critical. Improving women’s health makes societies stronger. Countless women simply don’t feel like their doctors are taking them seriously.
After the stem-cell transplant failed, David Israel had three primary choices: a donor bone-marrow transplant, CAR T-cell therapy, or palliative care. David decided to try CAR-T cell therapy, a new treatment that was recently approved by the FDA.
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.
“I think the best way to heal from cancer is to love life with all that you have,” he says. “Does everybody have to swim a river? No. But if they passionately pursue their dreams, it gives them the best chance to heal.”
We wanted to know how the “opioid crisis” was effecting people in our community, so we sent out a call looking for people living with chronic pain who are taking or have been prescribed opioid pain treatment who wanted to share their thoughts and opinions.
Health Stories Project was created to give people opportunities to share their personal health experiences and to learn from the experiences of others.
