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…
Janelle is a 21 year old student at the University of Nebraska at Kearney. She has a great sense of humor, has shown horses for years and someday she wants…
Years before I was diagnosed with late-stage chronic Lyme disease, I had been falsely diagnosed with a chest disease, chronically swollen lymph nodes, IBS and mild ADD with fatigue. With…
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…
Daniel's mother, Christine, considers him to be her "Special Little Boy." Born premature after five years of infertility and miscarriages, Christine thinks of Daniel as her miracle. Imagine her horror…
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…
Alexis Rosen was diagnosed with chronic Lyme disease after much confusion and months of searching for answers. She has since begun IV antibiotic therapy. After (finally) being diagnosed and deciding on a treatment…
When Debra Chiabai helped her good-Samaritan dad volunteer for his charity of choice—Muscular Dystrophy Canada—they both thought of it as a simple, nice thing to do. Many years later, that…
The mistletoe has been unhooked from the ceiling. The garbage man has manhandled your limp tree from your curb into his behemoth monster of a truck. The toys you just…
One thing that almost every person living with or caring for someone living with hereditary angioedema (HAE) knows is that over time... No one knows more about hereditary angioedema than those…
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)…
What would you do if you were the parent of a 5-year-old who is diagnosed with an extremely rare, incurable disease that causes vision and hearing loss, various neurological dysfunctions…
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…
Welcome to the first of many posts related to Patient Worthy's Video Series! We had the pleasure of interviewing PW contributor Kathryn Ferguson, a mother and a wife, who has…
I have had two major life-altering “incidents” in my life. How each was treated was so amazingly different, it leaves me in a place where advocating for myself and others…
Some teenagers have trouble staying awake in class--but most of them have a fairly normal excuse: they stayed up too late. Then there are teens who actually do have a…
Happy New Year Patient Worthians! This week, we kicked off #NewYearNewYou. We want to hear how you are making 2016 the best year yet! We are also continuing our support for CysticLife's collaboration with the…
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…
Can you imagine being only 7years old and having painful, unexplained, and reoccurring swelling on all parts of your body? How scary it must be to have your face, feet, legs,…
If ever there was a “girl next door,” it’s Ashley Coleman, a beautiful, bright-eyed-blonde and very active young woman! She’s got the smile of a Homecoming Queen! Even though Ashley…
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…
So…. As a dog fanatic, reading the Wall Street Journal headline “Why Dogs are Some Scientists’ New Best Friends” gave me the heebie-jeebies at first. I’m the kind of person…
If you have been anywhere near the hereditary angioedema (HAE) community, you may have seen or even asked a question similar to the one regarding the gender differences in the…
The Corr family has had a tough year. Tough, sure, but equally as joyous. They’ve been adjusting to life with their year oldest daughter Harriet. Soon after Harriet was born came…
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