According to Port City Daily, 21-year-old Haley Swanson has been living with dermatomyositis for 10 years. She was diagnosed at age 11 with the autoimmune condition, which means that her…
It is easy to feel alone after being diagnosed with a rare disease. You are surrounded by others that can only empathize so much with what you are going through,…
According to The Newport Daily News, for Danielle and Kyle Ray, it was an all-too-common love story. They were school-aged sweethearts who married in their early 20s, shortly after having…
Carol Littrell and Cindy Hamilton were coworkers. And according to JDNews, Neither imagined they would ever become much closer than that. But everything changed by one chance encounter. Carol has…
An Indian family found out their little girl, Parvathy, only three months old, had primary hyperoxaluria type 1. In simple terms, those words meant she was born without the enzyme…
For a long time now, I have wondered if a more natural or even metaphysical treatment to the chronic scaly, itchy, red skin I was experiencing from my guttate psoriasis…
As a writer for Patient Worthy, I often focus on successful clinical trials and recent FDA approvals for drugs. Quite frankly, I think that this focus has blinded me to…
We've all seen them - gymnasts jumping high, twirling low, and bending their bodies in ways most of us never thought possible! And if you think about it, gymnastics in…
The Internet can be a brutal place, thanks to anonymous bullying. But the Internet can also be a place of redemption, thanks to anonymous do-gooders! Case in point: According to…
Idiopathic Pulmonary Fibrosis (IPF) most commonly affects aging adults, but for columnist Charlene Marshall, the disease struck in her late 20s. A diagnosis in and of itself is shocking, but…
I was fortunate to have had optimistic role models during my formative years. They taught me that glass wasn't either half empty or half full, because the glass can be…
I was once walking through an outdoor festival near my hometown. There was a band playing off in the distance, but I didn’t know them or the song they were…
Adrenoleukodystrophy (ALD) is a terrible disease - but tell that to Ethan Jeffcoat, who spent his latest birthday playing with a python, alligator and more! ALD is a brain disorder that destroys…
Image source: https://healthyhandyman.com/ On the website ShortBowelSyndrome.com, people living with the syndrome share their personal stories and experiences and give tips, tools, and advice to others living with short bowel syndrome…
Losing a child is a loss like no other—the most devastating experience a parent can face. And for one daddy who lost his little girl to mucopolysaccharidosis, a very rare genetic…
I'll admit, I don't have sickle cell anemia, but I do have a bad habit: I don't ask for help. No matter the situation—maybe my car has been towed, or…
Not only does Pamela Looney have hypereosinophilic syndrome (HES), she also has asthma and has suffered from a tumor. At only 15, the sudden development of this tumor severely affected…
When you’re a preteen, fitting in (or at least, not standing out) can be a big part of life. Sometimes, you’re just trying to get along with schoolmates, teachers, and…
As a kid, I always had a pretty good hold on life. Despite my father being deployed during my formative years, I played sports, made good grades, and had great…
What are the reasons couples break up? When our relationships fail, we sometimes wonder if there was something we could have done to save them—or if there were warning signs we…
When Ellen Ripley used the Caterpillar P-5000 Work Loader to pick up the xenomorph queen in the 1986 science-fiction masterpiece Aliens, who would've known the suit was inspiring the next…
At the peak of my guttate psoriasis flare up, I had plaques covering my entire body. And when I say entire, I mean entire. My scalp was constantly littered with…
Jessie Parks is a writer for the Charleston City Paper. Her words are absolutely beautiful to behold. The reason she started her column? Her mother. who was diagnosed with Waldenstrom macroglobulinemia…
8-year-old Carter Anderson has PKAN. He’s only had his official diagnosis for about a year, as his parents were first told he had cerebral palsy. Since Pantothenate Kinase-Associated Neurodegeneration (PKAN)…
Have you ever just felt so desperate for something that you jump into a decision, without thinking it through completely or weighing the possible repercussions of your decision? It had…
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