It's true—there's power in numbers, especially when it comes to living with a rare disease. Inside the hereditary angioedema (HAE) community, the term "HAE" is thrown around willy-nilly. It's a…
I have lost two cousins and a very inspiring friend to idiopathic pulmonary fibrosis (IPF). So I’m very aware that: There’s a genetic component to the disease (if more than…
Aplastic anemia. What is that? In simple terms, it's a condition that causes your body to cease making an adequate number of blood cells. It's a very serious condition, and…
Looking for a good, concise description of common variable immune deficiency (CVID)? You could do a lot worse than to watch this video from the Children’s Hospital of Pittsburgh of…
Remember me? I’m the girl with big ambitions who refuses to allow my illnesses to get in the way. Within two months of being diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS),…
Mika Covington was diagnosed with cystinosis when she was 10 months old, and has struggled with its effects throughout her life. Cystinosis is usually diagnosed before the patient's second birthday. It's…
As a writer, every once in a while, I'll have an "A-HA!" moment: Usually when I realize my perception about something is off kilter, and the truth suddenly becomes apparent.…
Ankylosing Spondylitis (AS) is a form of inflammatory arthritis that most commonly affects the spine and is thought to have its roots in genetics. As symptoms worsen, the inflammation can travel…
Raise your hand if you've called out sick from work or stayed home from school for something as simple as the common cold? Well, I'm just going to assume most of…
Cheryl Jackson lived most of her life not knowing why she was chronically ill. She had recurring sinus infections, bronchitis, and pneumonia. In her 40s she experienced GI issues that forced her…
To the casual observer, one-year-old Thor Uran is a happy, healthy toddler with a winning smile and a shock of blond hair fitting for his super-heroic namesake. But Thor’s parents…
Thanks to narcolepsy, Brianne had an unusual childhood. She began having the symptoms of narcolepsy around the age of seven. As a young girl, Brianne would sleepwalk into the kitchen…
Recently, a website called The Mighty invited its readers to write a letter to the rare disease or mental disorder that affected them or a member of their family. One mother…
Our lives were forever changed on March 29th, 2004 – the day my son Tailen was born. There isn’t a day that goes by that I don’t wish that we…
Nolan is a rare dad not only living with, but running with dystonia. Patient Worthy has had the privilege of meeting him, working with him in a recent photo shoot,…
In this election year, a good way to practice being politically active is to write a letter supporting a bill with the catchy name Orphan Product Extensions Now, Accelerating Cures and…
When talking about genetic diseases, rare and otherwise, it helps to know a little bit about genetics. Every person's body has thousands of genes that are responsible for generating proteins…
In a segment on Oprah, dystonia patient Rogers Hartmann agreed to wear a camera on her head to show how she experiences the world. Bent at nearly a 90% angle, she frequently…
Socially active, super smart and patient worthy Dr. Kim Becher we applaud you! Patient Worthy found an awesome blog sponsored by the American Academy of Family Physicians (AAFP), Fresh Perspectives:…
I've got to give a HUGE shout out to the folks at Larson Heights Elementary in Moses Lake, Washington! One of their students, Michael Owen, was diagnosed with aplastic anemia…
Here’s a heartbreaking story out of the UK that reminds us never to take anything in life for granted. A young mother with two children, Saffron Taylor, was recently diagnosed with…
If you’re reading this I need to ask you an urgent question. Are you mixed race? Specifically, part Filipino and part European? Yes, I know, it’s none of my damn…
I’ve gotta tell ya that I’m pretty damn impressed with a gal named Joyce. I first heard about her arduous journey with narcolepsy after reading her story on the Narcolepsy Network…
The Dean of Student Affairs at the National Institutes of Health (NIH), Sandra LaBlance, has one thing to say about Rachel Hunt: “She will make a difference in the world.”…
"His health may challenge him, but his mind and determination are as sharp as ever." For decades now, Doug Burr has been actively involved in healthcare policy, with a focus…
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