Sometimes it feels like nothing is going your way. Though it can be difficult, try to find the positive. Silver linings can make a world of difference.
Tomorrow is another day. New beginnings and new opportunities are right around the corner and bad days don't last forever. Keep your chin up!
This is always something good to keep in mind, but especially around the holidays! Spoonies often are dealing with fatigue and pain. Don't feel like you need to do so…
It's not an easy swim but moving forward is important. You could be so close to having luck be in your favor.
Patient Worthy is wishing the very best Thanksgiving to our U.S. readers. Even if your meal isn't traditional, or is accompanied by a regiment of medications, we hope that you…
Cancer may have been called the Emperor of all Maladies but FOP-Fibrodysplasia Ossificans Progressiva is certainly the King. We place it lower only because it affects so few; one in every…
Rare disease mom Bobbie recently had a new baby. While she is overjoyed at the latest addition to her family, she is fearing for her baby daughter's life. Her family…
Rare Disease knows no party affiliation! Let’s pass the 21st Century Cures Act in the lame duck session ! The Everylife Foundation Action Center is calling for your action on November…
When that moment happened, and again I don’t know when it happened, but when that moment in my head just clicked and I stopped being, or stopped putting myself in…
It doesn't matter what other people see, what matters is how tough YOU know you are. Your inner strength has gotten you through a lot and will continue to!
Spoonies are strong every day and in spite of a lot. Don't forget that you have a courageous heart <3
Don't let things as important as tenderness and compassion ever be mistaken for weakness or fragility!
Author of Permission to Mourn, Tom Zuba, has developed a new way to “do grief”. His own personal losses of daughter, son, and wife have led him on the path…
Maybe you've seen Patient Worthy's article about Spoon Theory, maybe you've sent the Spoon Theory to friends or relatives, maybe you started using the term "spoonie" before you even really…
It's liver awareness month so remember that not all liver problems are related to alcohol use(for example, Primary Biliary Cholangitis). You may never drink a drop nor use any kind…
Takeda Pharmaceuticals is looking for patients to enroll in their new trial, described as; "A Phase 2, Randomized, Controlled, Open-Label, Clinical Study of the Efficacy and Safety of Pevonedistat Plus Azacitidine…
There is a new Phase 3 Clinical that is currently recruiting MDS patients, take a look at the info below if you're interested. For more info and resources about MDS…
Don't miss the last three MDS Patient & Family Forums in 2016! All three events are free, sponsored by The MDS Foundation. Topics to be covered include: Therapies and Patient…
The Castleman Disease Collaborative Network is hosting a gala next month to raise money to continue to research the causes of Castleman Disease and find the cure. Castleman is as…
I want to see my kids grow up. I just want to see them a happy, that’s all. I think that goes with just about any parent; they just wanna…
The MDS Foundation is hosting a free luncheon this November! It will be held at the Craftbar Restaurant at 900 Broadway (between 19th & 20th streets) in New York, NY.…
I shared it with my family. I shared it with my wife, my mother and my brother of course, and they were grateful that it wasn’t something that was going to…
There [are] treatment[s] for symptoms for dystonia. For neuropathy they can give you things like anti-depressants which have been known to curb neuropathy. They can do botox injections into the muscles…
The process to get diagnosed was a very long one. It was over two years that I first started seeing a neurologist regarding the concerns and issues that I was…
Don't miss the registration period for the MDS Patient and Family Forum Sept. 10th! This event is free, sponsored by the MDS Foundation.The event will cover things like Therapies and…
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.
