Have you read the first part of Kathryn's interview? Check out This Honest Mom Doesn't Want You to be Ashamed of Your Rare Disease. “Moving to the west coast has…
I may look "fine" to you on the outside but what I'm experiencing on the inside is not "fine". I have a couple of different forms of an incurable invisible…
Low Starch Roasted Fall Veggies a Side Dish for Thanksgiving Servings: 2 to 4 2 large golden beets 1 bulb fennel 1 small red onion optional: 1 to 2 kohlrabi…
For many like myself, the holidays can be bittersweet, and sometimes hard. Everyday, I am thankful for the people who are a part of my life. Sometimes though, I cannot…
As someone struggling with chronic illness, you are probably no stranger to the stomach problems that come along with treatment or just a reality of your disease. By now, you might…
I love desserts. Its “stressed” spelled backwards. There is just something relieving about being able to sink your teeth into something sweet. But when diagnosed with a chronic illness, often…
Tis the season when gratitude is in the air (can you smell it?). Wait, that may be the pumpkin pie. Anyway, Thanksgiving is a time of reflection. A time where…
¿Dedo Mutilado? ¿Contusión ósea severa? ¿Espalda rota? No, este no es un catálogo de lesiones de El Club de la Lucha – estas son algunas de las lesiones que el…
La iniciativa llamado el Patient-Focused Drug Development Initiative de la Administración Nacional de Alimentos y Fármacos (FDA por sus siglas en Ingles) ha anunciado la lista de enfermedades a las…
Chronic illness will forever affect a patient’s outlook on life. Sometimes, the outlook depends on how the patient physically feels in that moment. After my previously dependable health went downhill…
Because it's the month of #NERVEmber, we are highlighting CRPS and other nerve pain conditions. Diseases like CRPS and POTS often go unnoticed in the community at large. We are honored to bring awareness…
We are mid-#NERVEmber and gearing up for the Thanksgiving season! As we continue covering chronic illnesses like CRPS/RDS that can greatly effect the nerves, we are also highlighting some helpful tips and stats to…
Patient Worthy wants to give a shout out to Lisa D.! Congratulations on landing the #4 spot in all of AMAZON KINDLE and a 5 star rating. Her book is also…
Getting a diagnosis of any kind is scary. Getting a diagnosis of a rare, life-threatening autoimmune disease that you have never heard of is terrifying. But if you’re reading this,…
Being diagnosed with a chronic neurological illness can be vindication after years of countless specialist visits, tests and research. Yet, there is a still a type of bereavement period that…
Dear strong one, I look at you and I see determination. Things are so hard for you right now, rushing from hospital to hospital. I know that you never imagined…
Does the name Myasthenia Gravis sound slightly familiar? Probably not, but if you're a fan of the show #Empire, you came across it when Lucious Lyon was famously diagnosed with…
Here at PatientWorthy, we think laughter can be the best medicine. Ironic humor is sorta our thing. But to those easily offended, or perhaps even moderately intolerant, we suggest you…
Ellicott City, Maryland | President Marcia Boyle has spent decades advocating for people with immune deficiencies. Her own son was diagnosed more than 30 years ago when he was an…
Going off to college is a big change for anyone. You’re likely living in a new city, dwelling in a new room, and surrounded by hundreds, if not thousands, of…
When you’re young, healthy, and thriving, it’s hard to imagine that it’s possible to be taken down by a chronic disease, such as ankylosing spondylitis (AS). Like many young people,…
In this account, from Philly.com, Dr. Thomas Klein, allergist and immunologist, describes his problem. A mystery had come across his path that he didn't think he could solve. He was seeing…
Do you ever have any burning questions about a rare disease that you’re just dying to know the answer? Us, too. Lots of ‘em. That's why we're presenting our list…
We've seen great memes from the community, an awesome mom who is trying to raise awareness for CVID through a viral video, and so much more. Check out the highlights…
5-year-old Hadley Alexander isn’t normal. Every morning, her day officially begins at 7 a.m. She’s coaxed awake by her parents and, through a tube in her stomach called a g-tube,…
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.
