Mi nombre es Lisa y yo vivo con la artritis reumatoide (AR) y la fibromialgia. #myinvisiblefight está en curso, pero tengo fe, la familia y los amigos. Esta es mi…
I realize that as a woman who has been unmarried and dating for her entire adult life, my vocabulary is vastly different from that of someone who has been married…
Part 2: Intrahepatic Cholestasis of Pregnancy Click here if you missed Part 1. Before I went through all of this I had the very innocent idea that doctors knew what…
2016 has started out pretty rough. Beginning at around noon on January 1st, I had to deal with a very painful pocket of infection just to the left of my…
Last year, the FDA approved a record number of new drugs to treat rare diseases, according to the National Organization for Rare Disorders (NORD). In all, 21 "orphan" drugs were…
Hace 13 años, después de haber sido diagnosticado con una enfermedad crónica, Lisa Copen no podía dormir. Ella estaba tratando de encontrar la manera de manejar su nueva normalidad. Ella…
Dolor colosal. Hinchazón gigantesca. Hipersensibilidad. Los cambios drásticos en la temperatura corporal. Imagínese estar en ese tipo de dolor todo el tiempo. Francamente, suena un poco como una pesadilla. Bueno,…
Obtener un diagnóstico de cualquier tipo es aterrador. Conseguir un diagnóstico de una rara enfermedad autoinmune, que amenaza la vida que usted nunca ha oído hablar de es aterrador. Pero…
If the recent Powerball taught us anything, it's that humans love to get large sums of money. DUH! You've recognized the conversations. Co-workers standing by the water cooler talking about…
You want to know what the most popular position in bed is? Scroll down below to check out Lisa's most recent blog post to find out. For all of our…
El angioedema hereditario puede ser una enfermedad rara que califica para el estatus de medicamento "huérfano", pero estamos lejos de estar solo. Hay organizaciones de AEH y las instalaciones de…
You can read all the books, write all the articles, and study all the patients, but one thing will always separate someone without a rare disease from someone with a…
Depending on the intricacies of our personal health challenges, some of us may be motivated to take actions that others would find unreasonable. For example, I once met a man…
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…
When Harry Met Chelsea I frequently refer to online dating as “shopping for men.” I have my list of attributes I’d like to find in a mate, and the men…
What's the best way to raise money and awareness when you have a rare disease? Organize or participate in an event, duh. That's exactly what Dwayne Backer has been doing…
For many cystic fibrosis (CF) patients who grew up in years past, one of the greatest hurdles and frustrations was being told they couldn’t do something, especially sports or physical activities. Sometimes…
Dystonia causes involuntary muscle contractions and can result in abnormal posture. There are a number of different types of dystonia, and there is no known cure. Parkinson's disease (PD) is…
In the past, 14-year-old Louise Stewart-Scott, was used to flying through the air and across the mat during her gymnastic routines. But, at the age of eight, she was diagnosed…
Researchers in rare disease find it very challenging to find specimens. The Newborn Screening Translational Research Network (NBSTRN), has developed an easy way for researchers to access specimens through the…
Newly diagnosed patients and those who have been living with their illness(es) for a long time cope with their situation in very different ways. Some like to read while others…
Meet Patient Worthy’s newest contributor! Nikole is a mom with a background in education and incredible insight to the realities many chronically ill patients face. Diagnosed with Mixed Connective Tissue…
I’ve been using internet dating sites for the past eleven years. I have also been dealing with a rare and undiagnosed disease for the past five and a half years.…
Ever have one of those days when you just weren’t feeling very enthused about your life? You know what I’m talking about. Those ho-hum blues. Those days when you don’t…
PatientWorthy is teaming up with CysticLife.org to spotlight some of the members in their awesome community! CysticLife.org sprang from a blog started by CF patient, Ronnie Sharpe, to track his life…
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