If you have familial hypercholesterolemia, or FH, having a doctor who truly understands the disorder is essential. In a short YouTube video, Katherine Wilemon, president of the FH Foundation offers some…
We are happy to say that through our partnership with CysticLife.org and our awesome readers like yourself, Patient Worthy was able to hit one of it's New Year's Resolutions already....…
Researchers at Stanford University School of Medicine have discovered a gene that could possibly reduce the risk of cardiac issues, like heart failure. What's weird... it's the same gene, when mutated, that was…
Treatments for autoinflammatory diseases commonly require a patient to receive injections under the skin, which can be tricky if you are the parent of a small child (or large husband) who…
Michael Needham is a Vietnam veteran who served in the Navy before being discharged as a result of his ankylosing spondylitis (AS). In order to live with the pain of his…
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…
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…
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