I met a woman at a patient conference last year who confided she had just been diagnosed with narcolepsy. She said because she knew next to nothing about the disorder, she…
The above photo is of Kristina by Sandro Georgi Photography. Check out Kristina's story of living with narcolepsy by clicking here. If you visit Patient Worthy or our Facebook page, then…
Happy Friday Patient Worthians! Do you wish you can take a day off from your rare disease? What about when it seems like it's getting to be too much and…
Ser diagnosticado con una enfermedad neurológica crónica puede ser vindicación después de años de incontables visitas de especialistas, pruebas e investigaciones. Sin embargo, existe todavía un tipo de período de…
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…
Who is excited for another long weekend coming up this Monday?! To kick off your three-day weekend, take a look at these intriguing stories... Researchers have identified a superbug that…
Having dysautonomia is not just a challenge during the day at work, but also when it comes to exercising... which is of course a necessity when trying to manage POTS…
Do you live with Complex Regional Pain Syndrome (CRPS)? Are you looking for inspiration from someone with experiences like yours? Well… Katelyn (Katie) O’Leary, a 27-year old Indiana native living…
Robert comenzó su misión de dar a conocer la fibrosis quística después de conocer a alguien que había vivido con ella durante cuarenta y un años. Como él mismo dice;…
Happy New Year Everyone! How are those resolutions coming along? This week, we have a powerful post from one of our contributors who stopped taking her meds in favor of alternative…
Did you know that we have chemicals in the brain as powerful as drugs for pain, depression, anxiety, and other conditions? Among them are neurotransmitters called endorphins, serotonin, oxytocin, and…
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…
Happy Almost-New-Year Patient Worthians! What is your new year resolution? As someone living with a chronic illness, mine is to get back to my cardiologist for that much-needed check-up I've…
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…
Have you ever wanted to just take a break from addressing your illness? Like, taking those medical binders and folders and just keeping them in your car trunk for a…
Instituto Franciscano para la Ciencia y la Salud en Steubenville, Ohio patrocina la investigación sobre defectos metabólicos que pueden conducir a trastornos convulsivos relacionados mitocondriales raras. Si bien esta es…
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…
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…
¿Qué se hace con 180 minutos? Piense en esto por sólo 1 minuto ... Ahora, dedique 1 minuto más viendo el vídeo a continuación. Para los cerca de 30.000 personas…
Do you ever have those moments where you're doing something that seems very routine, but then you realize with sudden clarity how much of it is affected by your chronic…
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