Imagine if every time you stood up your world would start spinning, your vision would blur, and you’d faint or fall down. Prolonged exercise is out of the question. Extreme…
The latest in Waldenstrom macroglobulinemia news comes not only from the hospital clinic, but also from the race track, and the dance floor! As for the former, latest results are…
Medical malpractice. These two words strike fear into the hearts of millions of doctors all over the world, but especially in litigious societies, such as the United States. Not all…
This is not a warning, but some friendly advice: Start planning for next year and mark your calendar for February 28, 2018—it’s world Rare Disease Day! It’s the day that…
Have you ever noticed how frequently things get compared to the same small group of ideas? When trying to point out that something isn’t as complex as it appears, you…
In the mid-1990s, many in the United States were first exposed to the somewhat strange juxtaposition of choreographed leg flailing and still upper bodies. This was, of course, Riverdance. This…
There’s a lot that the marginal zone lymphoma community needs, but there is also a lot being said. Results from clinical trials are coming in, and patient testimonials are shedding…
Peer pressure. Celebrity endorsement. Expert testimony. Gut feelings. Impulsivity. Shared experiences. People do a lot of things for a lot of different reasons. Ad agencies bank on some of the…
Edgar Allan Poe’s idea of perfect beauty is frequently associated with living life to its fullest in a short period of time and dying young. Lenore, from his most famous…
We’ve all played hooky once or twice, right? Even your parents have played hooky before. That’s why they were so skeptical of you when you were doing it. But Michelle…
Most kids don’t like to share. The occasional hand-me-downs? Sure. For me, my books, games, and beloved Dale Earnhardt hair bows were sacred property—mine, mine, mine. I chose not to…
If you’re lucky enough to find a job that you’re passionate about, it’s easy to see “work” as anything but. Still, love your job or not, it’s important to know…
Mermaids have unique breathing concerns while they’re on land. In Disney’s “The Little Mermaid,” a young mermaid princess trades her voice for an opportunity to live on the land and…
Please. Take just five minutes out of your day to read about this SUPERBLY inspirational mom from Australia whose son has juvenile idiopathic arthritis (JIA). Yes, I’m begging but it’s…
Life was so much simpler when we were kids. We didn’t have to worry about bills, or how what we say could accidentally offend someone else. Heck, even the stories…
According to the Rare Disease Report, 50 years ago, when Tommy Hoag was six years old, he received a kidney transplant. Tommy needed this transplant after having Scarlet fever and…
Psoriasis is often labelled as “disgusting” or “contagious,” causing people who are afflicted by this disease to feel embarrassed and hide their skin from the rest of the world. But…
As a young woman, my friend Ruth Williams might have been concerned about getting breast cancer, but she never considered the condition that would threaten her life. She was 23,…
In 1998, The Mighty first brought the rare disease community into the spotlight, followed by Extraordinary Measures in 2010. Now, seven years later, The Big Sick is doing it again…
A breakout of pimples, a sunburn, and bad dandruff are all skin aliments that we probably faced while growing up, and all probably made us feel lousy, or at the…
Karl Swaine is nine years old. He has a rare progressive and genetic disorder called Hunter syndrome. This disorder prevents the body from breaking sugar molecules down. Throughout the world,…
When you think of an inspiring athlete, who comes to mind? Jesse Owens, who went to the 1936 Olympics held in Nazi-controlled Germany and proceeded to win four gold medals…
The phrase “take advantage” is a bit strange. It can be quite innocuous with regards to using something. For example, there is nothing too bad about saying, “I’m going to…
As a teenager, my acne and periods were agonizing! I have high school yearbook pictures that still make me cringe. After gallons of over-the-counter acne medications and pain relief, it…
What happens when you imagine running a marathon? Unless you are an avid runner, the thought may make you laugh or even cringe. Running even one marathon may seem nearly…
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