A frequent problem with for rare disease patients worldwide is being correctly diagnosed. Prior to the diagnosis you won't know the proper treatments, you don't know why you're experiencing your…
What at first glance sounded like nothing but good news, the FDA's approval of an Duchenne Muscular Dystrophy drug, has complicated undertones. It was announced last week that Emflaza (deflazacort) was approved…
I love my husband. He is my best friend. When we stood before God and our family to exchange vows, we made a commitment for better or for worse. Wow,…
The first time I encountered him, I stared at him, mouth agape with genuine shock on my face. He could not fail to notice my expression. Thankfully, he didn’t take…
I always love to read a heart-warming story. To me there is nothing greater than when family comes together during a hard time. That is exactly what two brothers did.…
Recent studies show that there may be a new treatment option for people who have specific forms of hereditary early-onset Parkinson’s disease. It’s actually a new twist on an old…
¿Qué pasa si vives con dolor crónico todos los días - y no sólo pequeños dolores, pero dolor de nivel 8 en una escala de 1 a 10? Kirah DeCarlo…
While discussing stem cells can immediately polarize a conversation, the promise they offer could silence the critics. The ability of stem cells to become other types of cells is well…
One of the biggest misconceptions around idiopathic pulmonary fibrosis is that once you get the diagnosis, exercise is off the table and there is nothing that you can do to…
Close your eyes. Now imagine what it would be like to have a hand swell to two, three, or four times as large as it normally is. It could happen…
As the New Year begins, we are all filled with hope of what 2017 will bring. For people with a rare and confusing disease, scientists and researchers are hopeful that…
The first medication to combat spinal muscular atrophy (SMA) has recently been approved by the United States Food and Drug Administration. It is approved for use by children as well…
12-year-old Sarah Stone has had sickle cell anemia for as long as she can remember. She experiences a lot of pain, takes lots of medicines and has had many surgeries.…
Got the post-Superbowl blues? Then check out these uplifting rare disease stories! One amazing young woman with cystic fibrosis got a sweet shout-out on Super Bowl Sunday, and another older…
Life has its obvious defining moments: graduation, our first house or apartment, falling in love and getting married, seeing loved ones pass, memorable trips, finding success, experiencing failure. The list…
With a title about courage, you might think that I am going to write about facing fierce enemies, not running from brutal battles, and boldly standing on blood-stained ground in…
It seems amazing that more than two years have passed since the Ice Bucket Challenge for ALS captivated the imaginations of Americans. Despite all the hubbub around the challenge, let’s…
Courage takes many forms. Most people think of it as a way of facing down enemies or standing on principle. However, a seven-year-old Irish girl named Katie shows her own…
Carcinoid tumors usually develop in the gastrointestinal tract or the lungs. Because they are very slow-growing, patients may remain symptom-free for a long period of time. While this is good,…
In the rare disease world, getting a correct diagnosis can be akin to playing the lottery. Symptoms often mimic other conditions, and many healthcare professionals have never seen a patient…
New therapies have increased the likelihood of a longer life with cystic fibrosis (CF). A few decades ago, it was not common for children diagnosed with CF to live past…
Here at Patient Worthy, we chronicle the news, issues, and stories affecting people living with or impacted by rare diseases. While the symptoms and mechanics vary from disease to disease…
Does the name Ludwig van Beethoven ring a bell? It should. He was one of the greatest composers the world has ever seen. He also suffered from cirrhosis of the liver, infectious…
If you’ve ever felt overwhelmed by everything going on in your life—finances, job, family drama (save it for your mama)—you have some idea of what mental fatigue feels like. But…
Hopefully, everyone in the Lyme community knows of Yolanda Foster and her family's battle with Lyme. If not her, then perhaps Avril Lavigne. If not her, then maybe they know…
© 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.
