Lady Kehveen Abernathy, of noble birth (or so she’d like to believe), is what many would call a youthful “old soul.” As a self-proclaimed “caregiver to the world,” impassioned about life, triumph, and all things beauty, Lady Kehveen strives to love others, seek understanding, and most importantly, spread awareness. But don’t let her sweet demeanor deceive you. Dressed to the nines over corset and petticoat, she’s made it her mission to defend the innocent and fight all things evil on this Earth. And being no stranger to chronic disease, she knows exactly where to start.
The first of its kind to be FDA-approved, the medication, CINRYZE®, works to prevent HAE attacks in teenagers and adults diagnosed with the disease. In patients with HAE, bradykinin, a…
The Myasthenia Gravis Foundation of Illinois is hosting the 2016 Strides Against MG Walk. This will be the foundation's fourth year hosting, so needless to say, they know what they're doing.…
What makes YOU tick? Is it Lyme disease? It was for Jenny Buttaccio, who suffered for years with "an ever-growing list of strange symptoms" without answers. Until finally, a doctor…
There are three types of hereditary angioedema (HAE)—Type I, Type II, Type III. Original, right? Type I and II are the most common types of HAE. Type III is the rarest,…
Raptor Pharmaceuticals, the makers of the cystinosis-treating medication known as PROCYSBI®, go above and beyond for the people they serve. If you have a child with cystinosis (or any chronic disease…
Let's be real... it personally offends me that Raptor Pharmaceuticals' logo isn't a velociraptor. Like, that is a missed golden opportunity. I'm just saying... there are a lot of drugs out…
Myasthenia Gravis (MG) can make it hard for its sufferers to function normally whatsoever, as is the case for Cathy Liner, a woman living in Salem, North Carolina. Cathy has dedicated her life to…
Have Lyme disease and want to to learn more about it? What about meeting other people with Lyme disease? Sound like something you're into? Come out to the 10th annual Lyme…
It's funny; when you hear the words "diet" and "nutrition," you tend to think salads, vegetables, fruits, and all that good, healthy stuff. But for people with cystic fibrosis, eating…
If you recall, here at PatientWorthy, we've talked a lot about "newborn screening." In case you missed it: What Every New Mom Should Know About Tyrosinemia What Every Pregnant Woman…
Editor's note: Ehlers-Danlos syndrome research is constantly evolving. Since the publication of this article, we have covered more types that were not included in this article. To check out a…
First things first. If you're in the U.S., Sjogren's is pronounced thus: SHOW-grin's. And because the physician it's named after was Swedish, there should be little dots above the "o": Sjögren's.…
It's hard to relate. It's hard to relate to people trying to relate. I always like to say, "Perspective is reality." Now, you're probably thinking, No, reality is reality. Yes,…
There's a pretty large handful of primary immunodeficiency disorders, but we're only going to focus on one: chronic granulomatous disease (CGD). I know what you're thinking... What the heck is…
So, your child has just been diagnosed with common variable immunodeficiency, or CVID. You probably have A LOT of questions, which is only normal. Doctors can be a great resource when it…
Health insurance. Ew, right? Totally. Health insurance is WHACK. Why you gotta know about health insurance right now? Mkay, I'm done with that. How was it, though? The lingo? Did I appeal…
Severe combined immunodeficiency (SCID)—one of the many forms of primary immune deficiencies. You may also know it as the "Bubble Boy" disease. Here at Patient Worthy, we've talked a…
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…
Never judge a book by it's cover, or a disease by it's name. Familial Mediterranean fever is not a chronic longing or fiery passion for the beaches along the coast of…
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…
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…
Did you know there are dos (that's Spanish for "two") forms of narcolepsy? Yep! Type 1. Type 2. Very similar in truth. Both involve excessive sleepiness. What distinguishes the types is…
Personally, I'm a cat person, but I've never had any doubt that Dog is Man's best friend. And this story has pretty much solidified that concept for me. Sam Sutcliffe…
On a Friday night, Torrie Kruse's world went black. The teenager can't recall being rushed to the hospital. She can't recall doctors scrambling around her hospital bed, trying to make sense of the problem. She…
At PatientWorthy, we've talked a lot about gene therapy, but we've never really taken the time to explain it. What the heck is gene therapy? How does it work? Well, like…
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