A disease or disorder is considered rare when it affects fewer than 200,000 Americans. Many families living with rare diseases feel alone or isolated. Rare disease advocates are pushing for more research and study to develop treatments and cures for these conditions.
Learn more by visiting The National Organization for Rare Disorders (NORD).
Pulmonary arterial hypertension (PAH) is a rare condition with only 500-1000 new cases being diagnosed each year in the U.S. Symptoms of PAH may include shortness of breath (dyspnea) especially during exercise, chest pain and fainting episodes. For the past few weeks, we…
Read More »
In January 2012, Kristen’s youngest of three children, Rylan, suddenly became very sick. Their trying path to a diagnosis for the then-one-year-old was just the beginning of a new and continuously challenging experience — which Rylan and his family have persevered as a…
Read More »
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…
Read More »
This story was written by community member, Shannah Hudson. If you would like to be featured in Stories From The Community check out our opportunities page for ways to participate! Emmalyn Reese Hudson graced us with her presence nine years ago, at 35 weeks…
Read More »
When most people find out someone is living with a rare health condition, their first thought is just how hard it must be for that person to carry on every day, facing their diagnosis. But for many who have a rare condition, the…
Read More »
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…
Read More »
Applying for disability wasn’t an easy decision for Erica Carrasco, the migraine blogger behind Achy Smile. She’d been a go-getter her whole life, but had suffered from increasingly severe headaches as an adult that eventually derailed her career. There was nothing left to…
Read More »
Margaret Miller knew early on that something was off about her redheaded baby girl, Gwen. As a one-month-old, she still wasn’t making eye contact. Underweight at birth but seemingly healthy at first, Gwen continued to miss milestones as she got older. She had…
Read More »
We deliver new health stories each week! –> Imagine visiting Yankee Stadium and being selected and singled out of the entire crowd. Being born with Hereditary angioedema (or HAE) is a similarly rare event. It’s so rare, in fact, that many doctors aren’t…
Read More »
Q&A: Outlifting Addison’s Disease Tyler Brown is a 28-year-old biomedical engineering student who lives in Columbia, Missouri. When he isn’t busy taking a full load of classes and conducting research, you’ll find him enjoying walks with his wife, lifting weights, reading philosophy, watching…
Read More »
Health Stories Project was created to give people opportunities to share their personal health experiences and to learn from the experiences of others.