Man with Cystic Fibrosis Races to Help Others – Part 1
“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…
Si usted tiene fibrosis quística, ¿estás loco a no querer un trasplante?
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)…
How to Get the Most Out of a Phone Call With Your INSURANCE Co.
Living with a rare disease? Struggle with insurance coverage? Phone calls with your medical insurance company are THE WORST! But, a necessary evil. After years of struggling with insurance coverage and payment, Patient…
La increíble nueva tecnología que todos aquellos con fibrosis quística querrá
Nosotros aqui en PatientWorthy siempre estamos en la busqueda de nuevas manera para hacer mas facil la vida con una enfermedad cronica. Nos dimos cuenta sobre esta nueva tecnologia que podria ser como…
King of Comedy Laughed in the Face of Sarcoidosis
Bernie Mac was a King of Comedy, but he was also living with sarcoidosis. April is sarcoidosis awareness month. What better time to honor one of the kings of comedy with…
Meme Monday Infographic – Sjögren’s and Mastocytosis
Sjögren's Disease and Mastocytosis are two very different illnesses, but have one thing in common: they are VERY rare. The infographic below provides information about what the disease is, prevalence…
Myelodysplastic Syndrome Takes Moses
He was suffering from the rare myelodysplastic syndrome (MDS) and fell victim to acute leukumia. The former executive director of Uganda Wildlife Authority (UWA), Moses Mapesa passed away on the morning of March…
So I Don’t Have To Pee in a Cup?!
Measuring Late-night Salivary Cortisol (LNSC) is an alternative to blood and urine for both research and diagnostic use. No wonder patients are opting for salivary cortisol testing over blood and…
7 maneras extrañas que sabes que tienes el síndrome de taquicardia postural ortostática (POTS)
Antes de que me diagnosticaran oficialmente con el síndrome de taquicardia postural ortostática (POTS, por sus siglas en ingles), pensaba que los síntomas extraños eran una parte de mí ser.…
Rare Disease Meme – Coffee: A cup with of benefits
Drum Roll Please and the Winner is …
Congratulations to Kristin, the winner of a $500 travel stipend to get to the 2016 Acromegaly Community Bi-annual Meeting! Patient Worthy is so excited to meet you Kristin! We are excited to…
Editor’s Choice: 3 Powerful Messages From Inspiring Women
It's officially April and it's officially the WEEKEND! PW Contributor Alexis writes of how her experience with PTSD relates to going through the process of diagnosis and treatment of chronic…
Rare Disease Meme – Silence and Reflection
4 Year Old with Super Cool Glasses and Myasthenia Gravis
When Myasthenia Gravis is diagnosed in a child, it is called juvenile myasthenia gravis (JMG). But for 4 year old Julius Chatman, the diagnosis was ocular myasthenia gravis. A very rare case,…
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