Listen up. This is important for the aplastic anemia community—especially for children who’ve been diagnosed with this serious condition. The Dana-Farber Children’s Cancer and Blood Disorders Hospital in Boston, MA…
Every now and then, I read a story that reminds me of the power of perseverance and a families love. "Mom, it's too late. I'm dying" is one of those stories. From the…
Sometimes when a person has to fight the daily battles with chronic disease, some things just don't seem as important as others. Occasionally, patients with chronic disease are understandably focused…
I have to admit that I had tunnel vision when it comes to patient advocacy. I naively thought that everyone was direct and honest with their doctors. I believed that…
For anyone who watched the television show "Law and Order," we all know that whatever the case, all the details were always wrapped up in under an hour. Prosecution. Check. Defense. Check.…
¿Quién sabía que el colonialismo podría ser una de las principales causas de las enfermedades raras ?! Al menos, ese es el caso de muchos quebequenses. La tirosinemia, que afecta…
Maybe you've seen Patient Worthy's article about Spoon Theory, maybe you've sent the Spoon Theory to friends or relatives, maybe you started using the term "spoonie" before you even really…
For decades, Venus Williams has been a powerhouse in the world of tennis. Since becoming pro in 1994, she has won 7 Grand Slam Singles titles and was formerly ranked No.…
It's liver awareness month so remember that not all liver problems are related to alcohol use(for example, Primary Biliary Cholangitis). You may never drink a drop nor use any kind…
This Halloween season, I want to revisit a post from more than three months ago that originally appeared on GoFundMe. It has since raised more than $18,000. "Grady will never taste…
Halloween is here! The night known for indulging and splurging on candy. For some people this may not be an option though, for instance people with familial hypercholesterolemia. Eating a…
You were rear-ended on the Interstate a year ago, and after the obvious injuries healed, you still had pain. But not just pain—really intense pain, and it shows no signs…
Congratulations! You're about to have a bundle of joy! You have names picked out, and you've been preparing for the past nine months to welcome this new little family member.…
Por lo tanto, digamos que usted ha vivido la mayor parte de su vida con un cubo de síntomas que nunca he entendido, y que los médicos nunca han sido…
Los atletas siempre parecen estar en un nivel más allá del alcance de los que les rodean, al igual que un santo o una diosa venerada. Su destreza física es…
Para los veinteañeros, ¿cómo se sentiría si estuviera viendo rápidamente su edad cuerpo? ¿Y si se miraba como una persona de 80 años de edad, por su treinta cumpleaños? O…
Happy Halloween Weekend Patient Worthians! PW Contributor Tom has two of the most popular posts this week! In one, he gives us a surprising outlook on dystonia. Additionally, he talks about…
There is a link between Gaucher disease and Parkinson's disease... but it may not be what you think. A study at Shaare Zedek Medical Center in Jerusalem, Israel, has revealed that…
I wonder if most families have a backup plan—especially when it comes to a family crisis? I’ve been reading about aplastic anemia this summer and am absolutely baffled about what…
My dad went from playing basketball three times a week at the local YMCA to not being able to climb the stairs to bed. And for two years, the doctors…
Happy Halloween! A lot of people grow out of Halloween. I personally love any reason to celebrate. I believe that life is short and it should be enjoyed at every…
You may not know Erynn Carroll, but on 5 November 2016, she’ll be taking a step in the right direction—and you can, too! If you live anywhere near Central New…
This informative video describes in simple layman's terms what cystinosis is, how it affects the body, and how it can be treated. But the main idea I came away with…
About a year ago, at the American Academy of Rheumatologists Annual meeting, there was a report presented about tofacitinib (TOFA) for the treatment of ankylosing spondylitis (AS). Tofacitinib (sold as…
Estoy enfermo como el demonio y no quiero aguantar más! Por favor que alguien me diagnostique ?! Allá en RareConnect, un hombre llamado Blair escribe acerca de sus síntomas: pérdida…
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