I cannot get enough inspiration from Moms and Dads who are heroically trying to find answers when their children are sick—and doctors are scratching their heads! I read about a…
To read part 1 of Teresa's post, click here. The sooner you treat [during an HAE attack], the better HAE meds work! The second stage of attacks is the swelling that is…
First described in 1882 by Heinrich Quincke, angioedema was regarded for more than one century as a rare disease. Subsequently, it was established that the hereditary form of the disease…
Life can be overwhelming, especially when living with complex regional pain syndrome (CRPS). The continual pressure to look good, to perform well, and to compete for wealth and affection creates…
Man, I’m not so sure that I believe in angels, but my heart is overjoyed whenever I hear about strangers who’ve donated ANYTHING to help ANYBODY! With aplastic anemia—depending on…
Outside his window, Josh watched, enamored, the colors of the sunset shifting, turning the sky orange, and then pink, and finally a bruised purple. He could almost forget where he…
Since I was very young, I have been mesmerized by the athletes in the Olympic games. The power, the grace, the dedication, and the celebration. I remained glued to my TV for…
Her name is Katelynn. Junior in high school. Third-year starter for her volleyball team, and a good one at that. She has it made... except for one thing. She suffers…
Imagine sitting in a doctor's office and hearing your child be diagnosed with cystic fibrosis (CF), or another grave illness. In this paralyzing moment, whatever was consuming your life minutes before…
There’s an interesting blog post you’ve got to check out—especially if you’ve been feeling guilty about telling people “No” while living with or caring for a loved one who has…
Click here to read Part 1 of Theresa's HAE Diagnosis. A couple of months later I flew back to Nebraska, got sick on the plane with an abdominal attack at…
When I was 20 years old, my new husband and I celebrated our marriage with family and friends, with a luncheon where there was no alcohol. Neither of us drank…
Have you ever counted how many pills you take in a day? I have and the answer is way too many. Like the other 50 million Americans today, I have…
Aaron es un graduado de la universidad de veinte-cuatro años de edad que viven en Alabama. Él es un empresario que se especializó en gestión de pequeñas empresas. Su padre…
For most people, the new year begins January 1st. me, my new year begins in early September. Why? Because I am a teacher. But not just any teacher. A full-time…
During New Year’s, it is impossible to take more than a few steps without bumping into someone’s resolutions. For us Lymies, it’s a bit different; we didn’t actively choose to…
After the diagnosis/Self harming thoughts After being diagnosed with dystonia and learning it is not a temporary problem (or if you have lived with it for years and are feeling…
I wrote the following poem when I was completely broken due to chronic pain. It is unfathomable to so many doctors that someone in so much pain can sit there…
It is always so heartwarming to read a great story. Especially, when someone beats the odds and overcomes something tremendous. Nicole Kelly's parents did not think they would see their…
On the phone, Katie Larimore of the Cystinosis Research Network (CRN) sounds like the happiest parts of a country song—she’s friendly, passionate, and prone to affectionate names like “honey.” She…
Conozcamos a la colaboradora de PatientWorthy mas reciente! Nikole es una mamá con experiencia profesional en la educación y una increíble visión de las realidades que muchos pacientes con enfermedades…
The holidays are a time of fun, family, and for many of us, a time when our chronic health conditions tend to flare up. We don’t mean for that to…
Sean Dean of Phoenix, AZ is no ordinary sophomore in high school. He is a second degree black belt, enjoys mixed martial arts, and also enjoys singing and dancing. You…
When you’re dealing with the intense, unrelenting pain of complex regional pain syndrome (CRPS), patience can wear more than a wee bit thin. Also, it’s hard to concentrate when dealing…
Wendy sits at the corner of a polished conference table. She’s timid by nature—a little mousy. Her voice squeaks out responses as she participates in the discussion. The conference she’s attending…
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