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.…
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.…
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…
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…
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…
Recently, my boyfriend and I were looking at places to go on vacation before he gets deployed. He wants to travel internationally because this is his last chance for a…
We want to celebrate our patient contributors and writers for their efforts in helping the rare community, bringing awareness, understanding and compassion to often neglected disease. The following article was originally…
I have a new hero, an Irishman who’s not only gotten some great press and notoriety, this guy has struck gold in the hearts of the Morquio syndrome community! In…
Since a young age, many of us have searched for something—a hobby, a passion, a quirk—that "defines” us. Much like the pursuits of Angela Van Batavia, a middle school teacher,…
Life is a reflection of our attitude, and we can learn a thing or two from Alena Galan, a young woman who’s living the dream as a college freshman, hosting…
I’ve been fat before, but when I was back in 2007, I never felt PHAT—as in “pretty hot and tempting.” So when I read the post about a fabulous, young…
We want to celebrate our patient contributors and writers for their efforts in helping the rare community by bringing awareness, understanding and compassion to often neglected disease. The following article…
Update: In June of 2016, we had the pleasure of interviewing Aleeya Young, an amazing teen with CF. Well, this Sunday she will be receiving a $10,000 2016- 2017 Sacks for CF…
In sharp contrast to my other two posts recently about the power of humor in living with Cushing’s disease, my heart goes out to another woman, a mom who’s had…
Most people think of children when they hear cystic fibrosis. Thankfully with new treatments and new therapies people are living much longer. This gentleman, named Gary Anderson, is a perfect example.…
When we are faced with a limiting health issue where performing "simple" everyday activities becomes a challenge, our self-confidence and self-worth can dwindle. This can happen with any health condition…
We can all say that our mothers gave us the gift of life. But how many can say that they gave the gift of life in return? One teenager in…
There comes the time when families ask the question,"When should we have another baby?" After having one child, and knowing the responsibilities that you have to take on, it can…
We want to celebrate our patient contributors and writers for their efforts in helping the rare community by bringing awareness, understanding and compassion to often neglected disease. The following article…
Here’s a story that serves as a sobering reminder of how genetic diseases can lay dormant and undetected for years, and how quickly they can come roaring to life… with…
After watching another YouTube video on fatty liver disease, I’m on a tear, specifically in addressing two types: First: Non-alcoholic fatty liver disease, which is also known as NAFLD and…
I met a woman at a patient conference last year who confided she had just been diagnosed with narcolepsy. She said because she knew next to nothing about the disorder, she…
How do you feel about your life today? Are you living every day in exuberance? Do you love what you’re doing? Are you excited every single moment? Are you looking…
The above photo is of Kristina by Sandro Georgi Photography. Check out Kristina's story of living with narcolepsy by clicking here. If you visit Patient Worthy or our Facebook page, then…
You may remember AS warrior Charis from our interview entitled "Move Over Barbie. This is the Model Little Girls Should Idolize". She discussed her journey with Ankylosing Spondylitis, detailing her…
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