Idiopathic Pulmonary Fibrosis or IPF is a disease where the tissue in the lungs becomes scarred and stiff, making it harder for a person to breathe and preventing the lungs from properly…
It's easy to identify the times when a medical condition works against us. In the case of acromegaly, people may experience: fatigue, muscle weakness, severe pain, limited mobility, impaired vision,…
It’s always awesome to announce a new clinical trial, especially for something that could offer relief to people suffering from the rarest of the rare conditions. And rare doesn’t begin…
Si su médico le ha dicho que se podía comer pizza, carne y otros alimentos ricos en grasa al día es probable que registrarse para que la prescripción inmediatamente. Pero…
"From belonging to an healthiest elite organisation to being hit by a rare disease is a leap which is not easy to accept." What is it about stories? Why do…
How would you feel if someone you love, someone you care about more than anything else in the world, needed brain surgery to remove a tumor and, right as that…
September is IPF Awareness month, I always love seeing the little things you can do to help raise awareness and involve anybody. I wish they could all go viral like…
When you’ve been diagnosed with a rare disease, it’s alarmingly common for your diagnoser to have just as many questions as you do… which is not comforting. Luckily, more resources…
On March 13, 2016, the SunHerald of Gulfport, Mississippi, announced a contest: school choirs could audition to perform with the rock band Foreigner. And in addition to that opportunity, the chosen…
Can I just tell you how I tired I am of all the millennial hate out there? People are beyond harsh to the younger generations, and this article on Heritage High…
Para una enfermedad que tiene tan poca atención prestada a ella, hay un buen número de personas que quieren llevarlo a la vanguardia en la forma de una exposición de…
If you're anything like me, you hate taking medicine, but you know that it's important and necessary to do so when you're living with a chronic illness. However, I'm always…
This September, Chicago is having a Hike for Lung Health to help raise awareness for IPF. If Chicago is to far for you to go to participate then organize a…
When you are diagnosed with a serious chronic illness like glomerulonephritis, you enter into an entirely new world. Suddenly, you’re spending time inside buildings most people never even noticed. Almost…
Sometimes life can throw a mean curveball and try as you might, you just can't dodge it. Ankylosing spondylitis is one of those curveballs. For some people, it can lie…
No es común que las enfermedades raras cruce con la cultura pop, pero cuando lo hacen, vale la pena sintonizar. Este verano, espectáculo de Lifetime Television, "The Balancing Act", contó…
Welcome to this week's Editor's Choice! When you have a rare disease like dystonia, you come across a ton of different reactions from people in regards to your illness. One…
No doubt there's strength in numbers. Maybe your family friends offer unending support that boosts you when you're low. Maybe you participate in a local support group or are part…
Featured Image is by Gavin Whitner at musicoomph.com. Dude, I’m sorry but this narcolepsy video needs way more than 90-some views. Posted on Grey Alquist’s YouTube channel, two young man made…
Imagine being 16 years old, and instead of meeting cute girls, going out with friends, and going to parties that get busted, you have to manage a rare, chronic condition…
When it comes to science and medicine, big things seldom come in big packages (get your minds out of the gutter). Groundbreaking discoveries that change our understanding of a disease…
dedo mutilado? contusión ósea severa? Fractura en la espalda? No, esto no es un catálogo de las lesiones del club de la lucha, éstas son algunas lesiones reales el Miami…
Most people know that high cholesterol is a ticking time bomb, and that it’s important to eat heart healthy foods low in saturated fat and cholesterol. Public health awareness—and the…
Kim Pimley is a mover and shaker, a businesswoman on the go. She’s one of those energetic people you see running up an escalator, to save time, and also, just…
September is IPF Awareness Month. A great way to raise awareness is by engaging your community. Write a letter to the editor of your local newspaper and share your story…
© Copyright 2024 Patient Worthy
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
