Lynn Holman believes that her pregnancy may be the reason she got diagnosed with hereditary angioedema (HAE). At first, Lynn thought she had a bad allergic reaction one morning because…
Ever since Andrew Wakefield and his cohorts published an article in The Lancet that warned of the measles, mumps, and rubella vaccine being linked to autism and bowel obstructions, the…
Hereditary angioedema (HAE) has long been misunderstood. Many patients go for years without a proper diagnosis because the medical community knows very little about this rare condition. Part of my job…
I want you to think about spinal muscular atrophy (SMA), a genetic disease affecting the part of the nervous system that controls voluntary muscle movement. Then, think about the word: DIGNITY. Dignity…
The drug, Ceriliponase alfa from BioMarin, helped in a condition that has led inexorably to disability and death: Batten Disease – specifically CLN2. Families of kids facing this prognosis are…
Happy Friday Patient Worthians! Did you know it was World PI Week this week? We have a post on the role pets have with PI. We also have a story on a…
I was at a gala hosted by my local library about two weeks ago. It was a posh affair, as library galas go, and everyone was all dressed up. The…
There’s one person I learned about today who has an admirable life mantra. The young man is D’Marco Jackson, and he lived with aplastic anemia (AA), but he succumbed to…
No matter how mentally flexible or strong you are, we all have a breaking point. Unfortunately, many of us tend to push ourselves as far as possible until we reach…
Siblings! We all have our opinions. Not everyone has that close unified bond with his or her brothers and/or sisters, but one thing is certain: If the connection is there,…
When you’re a parent, the childhood milestones are many. Flash, blink, bam—and then the rite of passage to adulthood starts. Yeah, I know… I flew through those first 18 years…
Anger. Who doesn’t get angry? From big to small stressors in life, there are far far far too many triggers to choose from that can set us off. But, what…
The transition from childhood to adulthood—the “coming of age” of boys who become young men and girls who become young women—is a significant stepping stone in everyone’s life. However, the…
I’m barking mad! You know the old saying, “Let sleeping dogs lie,” right? Well, I couldn’t help but think of the 200,000 Americans living and struggling with narcolepsy because they’re…
A health crisis—just like epidermolysis bullosa (EB)—is different for everyone. But, most have one thing in common: Bad news blindsides us. We take a hit—a hard one at that. When…
Have you ever been lonely in a crowd? Have you ever been perfectly content all alone? Me too. And although it’s a little crazy to admit, I’ve also suffered from…
Not many people can say they’ve dedicated their life to curing the disease that could lead to their death, but David Fajgenbaum certainly can. In a fascinating Science Magazine article, David…
Marijuana use is certainly controversial and a debated topic. But what's less debatable is the progress of the movement to legalize and embrace it American society - especially for medicinal use.…
For most of us, a nice stroll in the woods is a leisurely activity for relaxing or light cardio. But for disease ecologist Richard Ostfeld, a walk in the New York…
What does it mean if you have the sickle cell trait? Or what if you have sickle cell disease? Does it mean you can’t exercise? Does it mean you will…
It’s a plot device. It’s a joke to be exploited by comedians. It shows up as the punchline in movie after movie. As soon as it comes out that a…
Happy Friday Patient Worthians! PW Contributor Tom Seaman talks about what it's like to overcome the mental toll of your rare disease diagnosis. Another PW Contributor suffering from TN, dysautonomia and…
This article was originally written a year ago. We are republishing it today in Prince's memory. I’m sure you’ve seen countless tributes to Prince in honor of his legacy.…
Feeling distraught because your child may have nonalcoholic fatty liver disease (NAFLD)? Well you should be—but keep in mind there is still time for hope. I read an easily digestible…
Common variable immune deficiency is just one of a cluster of disorders under the primary immunodeficiency diseases (PID) umbrella. People with this rare condition are often repeatedly misdiagnosed because there is a…
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