What is the “Terrible Paradox” of FH?
The National Lipid Association hosted its 2016 Scientific Sessions from May 19-22 of this year and included sessions on familial hypercholesterolemia (FH). Now, in recognition of FH Awareness Day (September…
Though "Ernest" is a family name that's been passed down for generations, James truly earned his middle moniker when, at the age of five, he told his mother that "laughing is stupid unless EVERYBODY is happy." Since then, the serious little bastard has been on a mission to highlight the world's shortcomings (and hopefully correct them). In addition to his volunteer work at hospitals and animal shelters, James also enjoys documentaries and the work of William Faulkner. He is originally from Oklahoma.
The National Lipid Association hosted its 2016 Scientific Sessions from May 19-22 of this year and included sessions on familial hypercholesterolemia (FH). Now, in recognition of FH Awareness Day (September…
On Saturday, 29 October, 2016, the Adam Gardiner Fund will host Come Racing at Rosehill Gardens in Randwick, Australia. The event, like everything the AGF does, is intended to raise funds to…
There's good news for people living with Hereditary Angioedema (HAE), the genetic disorder that results in sudden and severe swelling basically anywhere throughout the body. As those living with HAE know,…
If you've got Fabry Disease and you live in Canada, you've GOT to check this out. If you don't have Fabry Disease, allow me to clue you in: It's a…
On November 12, 2016, Present Troubles Racing will host their Hills and Hollers Half Marathon & 5K, which is intended to raise awareness about amyloidosis and funds to help support those affected…
If you're a woman experiencing a multitude of heavy bleeding days, you should do two things as soon as you can: Check out this website Talk to your doctor According to…
Classified as a "chronic movement disorder," dystonia may appear to some as a disease of the muscles. Like it's cousin Parkinson's disease, however, dystonia is actually a neurological defect. While it's…
It's never easy to lose someone you care about to IPF. It can help, though, to not just mourn their loss, but to celebrate their life. When Irv Feldman passed…
For anyone living with acromegaly, which substantially increases growth hormone, it shouldn't be a secret that the condition is hard to treat. The gold standard for first-line treatment has been…
What does pulmonary fibrosis, or scarring of the lungs, have to do with blood? Probably more than I'm aware, because when I first saw that a biopharma company specializing in…
It's easy to identify the times when a medical condition works against us. In the case of acromegaly, people may experience: fatigue, muscle weakness, severe pain, limited mobility, impaired vision,…
How would you feel if someone you love, someone you care about more than anything else in the world, needed brain surgery to remove a tumor and, right as that…
On March 13, 2016, the SunHerald of Gulfport, Mississippi, announced a contest: school choirs could audition to perform with the rock band Foreigner. And in addition to that opportunity, the chosen…
Anyone living with acromegaly should understand their treatment options and why they're being proposed. The UCLA Pituitary Tumor Program has a video outlining some of the treatment considerations for acromegaly. It's…
Last November, Janet Woodcock - the Director for the FDA's Center for Drug Evaluation and Research - gave the keynote address at the Pulmonary Fibrosis Foundation's summit in Washington, D.C.…
In 2013, the British Lung Foundation (BLF) released a Patient Charter for people living with IPF, or idiopathic pulmonary fibrosis. In it, they outline the five basic rights of people with…
Getting a diagnosis of idiopathic pulmonary fibrosis, or IPF, has got to be scary. It's a progressive disease and the only "cure" is a successful lung transplant (which obviously carries severe…
Miry Constantini-Souroujon is a professor in the Department of Natural Sciences at the Open University, Israel. She has spent three decades studying myasthenia gravis (MG) and ways to treat it. Here, we…
San Angelo Live reports Keelie Brydson first noticed something was wrong in the fourth grade when, she says, "my eyelid would be really droopy." Turns out that Keelie has myasthenia…
Recently, we at PatientWorthy told you why checking for ticks is the most important thing for you to do this summer, and the proper way to make ticks pull out…
There's good news for people living with carnitine palmitoyltransferase (CPT) deficiency and their caregivers! Ultragenyx recently released data from an open-label study of the treatment triheptanoin. In the study, five infants…
A year ago, Novartis let people know that its drug, secukinumab, had shown positive results in a Phase III study for the treatment of ankylosing spondylitis. Now, the same drug could…
How do I know if I have Lyme disease? The Center for Disease Control has a helpful infographic showing the most common symptoms from 2001 to 2010. In order from most…
2006: "HAE is almost never suspected as a potential cause of acute pancreatitis." - PubMed.gov 2007: "Pancreatitis is rarely a complication of an acute HAE attack." - The Journal of…
What's it like to live with myasthenia gravis (MG)? Let Olivia Truncale tell you: The 19-year-old college sophomore was diagnosed just over two years ago, shortly after her legs gave…