Caring for a child diagnosed with a rare chronic condition is no small feat for anyone, but this Mom, Rebecca Martin, is definitely rising to the challenge. In her blog,…
Here at Patient Worthy, we love to share the news. The ability to keep you up-to-date on the latest and greatest about different rare diseases is the heart behind our…
We last left Allen's story where this brave soldier had to leave the service due to the immense pain caused by a mystery condition. To get caught up on…
Surfers are known for their "hang-loose" no worry attitudes. But one thing that most people tend to overlook is their relentless spirit and the will to overcome all odds. Meet…
What does roasted corn have to do with cystinosis? If you're scratching your head, don't worry: At first, we were too. But in Buffalo Grove, IL, an annual Corn Roast sponsored by…
How much do you hate having to watch your common variable immune deficiency (CVID) child infuse? It’s heart wrenching, not to mention, exhausting dealing with the push back from children who…
Ciara and Billy Nichol, who live in northwestern Ireland, were overwhelmed when a cry for help went viral. Their daughter, Ellie, suffers from one of the rarest diseases in the…
What comes to mind when you think of dancing? Blushing ballerinas? Fred Astaire cutting rugs with Ginger Rogers? Dancing Chihuahuas? Far be it from me to criticize either mental image,…
When a doctor says it’s necessary to do a lumbar puncture on your two-year-old son, momma bear instincts kick in. Health News Digest reports that’s what doctors recommended when Lisa…
The people have spoken. The Patient-Focused Drug Development Initiative of the Food and Drug Administration (FDA) has announced the selection of diseases it will address during 2016 and 2017. Which…
No one likes shots. We are talking needle shots. And no one likes hereditary angioedema attacks. So it’s no secret that people having an HAE attack don’t want to give…
In this blog posted to the Michael J. Fox Foundation for Parkinson's Research website, retired attorney Allison London, who also has dystonia, talks about the gifts that come with having…
Everyone deserves to have a hero. Whether it's a fictional one that fights baddies or a gentle giant who use to tuck you in at night and read you bedtime…
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On August 17, 1999, Ian Kent woke up with a gnarled body. "Two years later I learned to walk again," he told the Toronto Star. Kent had been a competitive…
Here’s the scenario: You or someone you love has just been diagnosed with high cholesterol. You’re probably on overload trying to digest what this life-threatening condition means, the impact it…
Serogroup B Meningococcal disease (or Men B): is a serotype of meningitis that is common in the US and can, take families by surprise. The viruses victims can start feeling…
In January 2003, Allen should have been in the best shape of his life. After all, he’d started basic training just a month prior in an effort to become…
Parents who love their children can appreciate when treatments are available to bring hope and healing when their young ones are sick... On August 17, 2015, one more ray of…
Like many with hereditary angioedema, this family didn’t know the disease was affecting several of its members until one member, Ken, was diagnosed at 25 The Telegram reports. From there,…
You see them everywhere--although they look out of place in the grocery store, or at the movies, or--even worse--grooving in dance club. Why are they not in school? They're teachers,…
We all know the classic yoga "type": thin, white, thin, "new-age," thin, Gumby-like limbs. Did we mention thin? Over the years, yoga (especially the cult-ish torture/nirvana that is hot yoga)…
If you’re one of the estimated 1 in 25,000 to 50,000 people in the U.S. living with common variable immunodeficiency (CVID), regular IV injections are a fact of life. Because…
Recent twitter developments in the Chronic community have involved the possible discovery of a new mascot. Karl Austin (@Porkchop275) came across a picture of a shark, and after determining that…
When the House passed the 21st Century Cures Act in a groundbreaking 344-77 vote, the decision felt like a defibrillator, deploying life-saving shocks to the healthcare system. Critics may…
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