When Stephen was growing up, he had no idea he'd one day be diagnosed with Common Variable Immunodeficiency (CVID). As a kid, he had a lot of trouble with ear and sinus problems.…
Losses occur at every stage in life, particularly in the later years. As we age, we must cope with a variety of setbacks – physical, social, or emotional – that…
Living with cystic fibrosis(CF) can change everything. When you hear that someone, whom you love deeply, has been diagnosed with something that is incurable your life changes dramatically. When reading…
How many 22 year old kids do YOU know who live WELL with a chronic illness? Uh, I can’t say I know many other than one kid who has type…
Kathleen Bissell (wonder if she's related to the vacuum people) wrote about Ernie Els's putting problems during The Masters over on www.progolfnow.com. Why do we care at PatientWorthy? Because Bissell…
Would you let a diagnosis of dystonia turn you inside out? Could it make you forget how to see the good in life? It may be time. Time to cue…
You've gotta love it when someone takes a bad situation and makes the very best out of it. Jake Silverman and his family have done just that. At 10 years…
Two years ago, my phone rang in the middle of the night and our journey with heterozygous familial hypercholesterolemia, or HeFH, began. My immediate thought was I'd won the Publisher's Clearinghouse Sweepstakes…
Schnitzler syndrome was initially identified in the 1970s. Patients usually have fever, bone and joint pain, fatigue, anemia, enlarged liver and spleen, and a strange rash. The rash is resistant to…
We all need to cheer and whoop it up for these two brave women who suffer from Ehler-Danlos! Brooklyn Mills and Erika Crawford, who are living with the condition, decided…
In 1980, Dewayne Rettig, then 22, was proudly serving his country in the US Air Force. Stationed in Germany, he had no idea his life was going to change forever. One night,…
If you have dopamine beta hydroxylase deficiency (DBHD), you're part of a very exclusive club, one that you probably would have passed on if you'd had the chance. With this…
Being a caregiver is among the most important jobs a person can take on, but it comes with its own set of perils: isolation depression sleep deprivation So, if you…
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…
Here’s a charming and ultimately optimistic little story about how a mother’s vigilance combined with the right doctors and hospitals can make a real difference in a child’s life—and how…
Maybe it’s just me, but it feels like turning on the television, picking up a newspaper, or going online should come with a trigger warning. Everywhere you turn it seems…
I recently posted an article on aplastic anemia in response to another post that I’d read. I felt compelled to mention that a dear friend of mine was diagnosed with…
If you’re the parent of a small child—or any size or age child, really—here’s a good reminder of why you should hold your baby a little closer and be thankful…
You know that saying people use when someone’s facing a flood of crises? “God doesn’t give you more than you can handle?” Depending on your point of view that may…
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…
Charis es una californiana, activista, motorista ávida, blogger, y modelo. Ella fue galardonada con el Premio 2014 Avances en la política por la Arthritis Foundation, la región del Pacífico…
Every now and then, we all have bad days. But for a child living with a chronic illness like hemophilia—it’s just sooo unfair. I read an inspiring article written by a married…
If you have sarcoidosis, you already know that it's a disease that causes inflammation that in some cases, doesn't go away. The body's immune cells clump together and form granulomas.…
I discovered this neurologist, my current neurologist, through an occupational therapist who was trying to help me learn to live with whatever condition I had at the time, because I…
Like a lot of overweight young adults, I struggled with weight for pretty much my whole life. My mom always tried to get me to eat better and I pretty…
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