Life would probably be easier for three-year-old Kayden Bell if doctors could determine a diagnosis for him. So far, he's been diagnosed with microcephaly, global developmental delay, hypomyelination and dystonia with…
If you haven't gotten a chance to read part 1 of Sue's Story click here! For the rest of you who we left on the edge of your seats, without…
Before any new beginning comes a last goodbye. As this old year closes out, I am overwhelmed by the amount of change that has taken place within it. Most years…
To read Part 1 of Mari's #NewYearNewYou post, click here. Now, let's focus on the New Year shall we. What do I want for 2016? That's a loaded question! But, I'll…
Hello Patient Worthians! Are you sticking to your New Year's Resolution so far? This week, we have more patient #NewYearNewYou contributions, the first of our video series, and a recipe that…
With rare diseases come common myths. Whether you have HAE, CAPS, HIDS, FMF, or any other combination of letters, you've probably heard an eclectic array of myths. Here on Patient Worthy, we…
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…
Another science fiction trope may be moving closer to science reality. Smartphone and tablet-maker Samsung and medical device company Medtronic have joined forces to create something startling: Neural implants that…
So here we are. A new year. 2016: A year for new hope and new potential. I've seen so many friends and family make these "New Year, New Me” New…
Todd Hart's name should really be Badass McGee. A triathlete, Hart completed the 2009 Boilermaker 15k in 58:22. (The race's site bills it as "the most competitive 15k road race…
[mlw_quizmaster quiz=1] Share this quiz with people you know who might know a thing or two about CAPS.
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…
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…
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