Mika Covington was diagnosed with cystinosis when she was 10 months old, and has struggled with its effects throughout her life. Cystinosis is usually diagnosed before the patient's second birthday. It's…
Here at Patient Worthy we’ve written before about the heavy toll Severe Combined Immunodeficiency (SCID) can have on families and about the lessons learned from the most well-known SCID case,…
I revisited an article about a clinical trial that focused on women with pulmonary arterial hypertension (PAH), and I’m still baffled, because it just doesn’t make sense. The information provided about…
I often find myself perusing the interwebs while at work (strictly for research purposes ?) and, like an informed citizen, I was catching up on some news. I stumbled on this lovely…
“My biggest passion in life right now is our team and just trying to help those with CF to be active.”- Manny Goguen Twenty-four-year-old Manny Goguen, a man living with…
In theory, I know there are people who don’t like chocolate. I have been told they exist. And I respect that choice. But my chocolate-loving heart really aches for people…
Leí un artículo recientemente por Andrew Smith que me ha desconcertado, no por él, sino más bien los hechos alarmantes que discutí acerca de las personas con fibrosis quística (FQ)…
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