A couple of months ago we took a look at the legacy of David Vetter, the “Boy in the Plastic Bubble” whose lifelong battle with Severe Combined Immunodeficiency (SCID) caught…
I am jumping for joy after learning there’s new hope for people in the CGD community! In October 2015, Horizon Pharma, headquartered in Dublin, Ireland, announced they will be opening…
I read an article recently by Andrew Smith that has me baffled—not by him, but rather the alarming facts that he discussed about people with cystic fibrosis (CF) who elect…
Most girls rebel at the idea of ever becoming their mother. The passive aggressive judgments, the dancing in the grocery store, and of course, the embarrassing stories. As described by…
If you have an autoimmune disease, you probably know that there's a lot of overlap between all the different autoimmune diseases, including symptoms, specialists, and treatments (thank goodness for off-label uses…
In November 2015, PatientWorthy sounded off on an article that I really liked called: “A Day in the Life of a Narcoleptic” by Steven Jackson. I applauded (and still do)…
In an effort to learn more about neuromyelitis optica (NMO)—a chronic illness also known as Devic’s syndrome or Devic’s disease—I tuned into another YouTube video of a PhD. He'd been…
It’s happened to all of us. It’s Friday afternoon. You’re at the airport, waiting anxiously by the gate to catch the next flight out. It’s been far too many days…
Noted Denver saxophonist Clare Church has played with some of the greats, including Tony Bennett, the Temptations, and Dizzy Gillespie, but two years ago something changed. In an interview with CPR.org's…
“We all need role models who fuel our desire to make the world a better place. Mine is my dad.” These are the opening words of a powerful blog post…
You know a person living with a chronic illness is giving you the REAL story when, after being asked, “What does your Cushing’s disease affect?” she (in this case the…
It’s not often that the “old” people are worried about the “young” people having heart attacks. But, unfortunately, that’s the reality for the Watts family. Their seven-year-old daughter, Avery, has…
Okay, people in the CF Community, listen up! A new targeted treatment for Cystic Fibrosis (CF) may be on the horizon sooner vs. later, and I’m pretty freaking excited about it! This…
If you have narcolepsy, excessive daytime sleepiness, and/or cataplexy, you know how hard it can be to function in "real-world" time. And while treatments have improved, there is still no…
According to the Cystic Fibrosis Foundation, about 30,000 people are living with CF in the US and just about 1,000 new cases are diagnosed each year. Cystic Fibrosis (CF) is a chronic inherited disease.…
Only THREE more days for families, patient advocacy groups, and researchers to give input into NIH’s new initiative on undiagnosed disease research. Do you have ideas about strategy, metrics, approaches…
Doctors don't always know best. That's something every parent whose child has a rare, chronic illness understands. These parents featured on Rare Connect finally got a diagnosis of Muckle-Wells Syndrome…
Dominick “Dom-the-Bomb” Lukowski has always loved baseball. But during his freshman year in high school, he was shocked to notice that he barely had the strength to throw a ball…
Say it with me: "NOH-mid" (or if you prefer, Neonatal-Onset Multisystem Inflammatory Disease...) "NOMID...is a rare disease that is often fatal. This video tells the story of Kayla Martínez, who was…
Okay, all of you dog lovers, listen up! Love ‘em all ya want—shower your own dog, your neighbor’s dog, a random dog in the park—with all the kisses, hugs, and…
Lo admito; De las docenas de veces que he visto a la película "The Princess Bride", nunca me detuve a pensar en el actor Andre Roussimoff. Él es el tipo…
Cuando eres es un padre preocupado con un hijo enfermo y los médicos no pueden decirle lo que está mal, o darle respuestas que no conducen a soluciones, ¿qué se…
You know what they say about a guy with big feet... ...he's also got a BIG dictionary, ya know, since he's probably had to research acromegaly. Okay, maybe they don't say…
We are mid-#NERVEmber and gearing up for the Thanksgiving season! As we continue covering chronic illnesses like CRPS/RDS that can greatly effect the nerves, we are also highlighting some helpful tips and stats to…
As reported by the Pain News Network, when someone suffers from chronic pain, chances are he or she might have more than one ongoing disease or condition. This is called…
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