Last year, the FDA approved a record number of new drugs to treat rare diseases, according to the National Organization for Rare Disorders (NORD). In all, 21 "orphan" drugs were…
At the age of 10, Cassie Barnby began educating medical students about a rare disorder called tyrosinemia which affects only 1 in 120,000 people. Now 17, and a senior in high school,…
Seventeen-year-old, Brooke, diagnosed with cystic fibrosis (CF), had only one wish. Inspired by Kevin Durant and his Aunt Pearl shoes designed for cancer awareness, Brooke told the Make-A-Foundation she wanted…
Dolor colosal. Hinchazón gigantesca. Hipersensibilidad. Los cambios drásticos en la temperatura corporal. Imagínese estar en ese tipo de dolor todo el tiempo. Francamente, suena un poco como una pesadilla. Bueno,…
Thanks to a bad band's 1984 contribution to "culture," everyone’s got a sarcastic “I’m a big deal in Japan” T-shirt. But for once, a blog is writing that phrase without…
If you are a parent of a chronically ill child, there are a million things running through your head every single day—day in—and day out. Enter the parents of a…
El angioedema hereditario puede ser una enfermedad rara que califica para el estatus de medicamento "huérfano", pero estamos lejos de estar solo. Hay organizaciones de AEH y las instalaciones de…
Depending on the intricacies of our personal health challenges, some of us may be motivated to take actions that others would find unreasonable. For example, I once met a man…
When Ashley Owen was a year and a half old, her family received news that would forever change their lives. As described through her silent but powerful Youtube video, Ashley…
In the "Don't judge; you never know what someone's going through" department.... Oh. My. GAWD! This woman is awesome! Growing up, this young woman blogger, whom we'll call Ezzie, was…
Living with Duchenne muscular dystrophy (DMD)? If you aren't familiar with Solid Biosciences, you should be! Here at Patient Worthy, we give credit when credit is due. We root for…
Can you believe it? Patient Worthy has made it to the big times by winning an award for being the best patient-centric consumer website. We're stoked! But here's what really counts:…
By now, you may have heard of the website, Pinterest, which came to the public's attention in 2011. Or, you may be one of millions who actively engages with the…
With public perceptions changing regarding the use of medical marijuana (cannabis) in the United States, studies are being conducted to determine the possible disease states that could be treated with the regulated…
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…
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