One of the most heart-wrenching aspects of Lyme disease is the lengthy process that precedes an accurate diagnosis. Healthcare providers have a difficult time getting a handle on an accurate diagnosis…
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…
Ehlers-Danlos Syndrome is a complex genetic disorder that is caused by defects in the body's structural proteins, also known as collagen. Hypermobility of the joints is one of the most…
One of the hardest parts of living with a rare disease like myasthenia gravis is just finding someone else who lives with the disease. MG patients are few and far…
In the past, a diagnosis of Huntington's disease offered the patient absolutely no hope. It was understood that a downward trajectory was the only way the disease would play out,…
Jeff Joseph. Record Spotlight reports he’s not like every 24-year-old trying to figure their way through this so-called “real world.” He’s different—in challenging ways and in freakin’ cool ways. Joseph…
Happy Almost-Father's Day Patient Worthians! This week, we have some important information on the rare disease myasthenia gravis in the spirit of June being it's awareness month. Also, have you ever…
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…
Quick question: What does multiple myeloma have to do with myasthenia gravis (MG)? On the surface, not much—one is a rare cancer of the blood, the other is an autoimmune…
Amyloidosis Trailer: A Tribute to The Amyloidosis Foundation from katelyn Payne on Vimeo. This trailer for the Amyloidosis Foundation's documentary was created by a student whose mother has amyloidosis. It…
Burning Nights is a chronic pain charity in the UK that was set up by Victoria Abbott-Fleming, a CRPS patient and author. The organisation gained official charity status in spring 2016…
Still not feeling well? You are not alone! The new, and validated survey instrument on quality of life for patients being treated for acromegaly, developed by Dr. Maria Fleseriu and…
Come one, come all! Well, if you have mucopolysaccharide (MPS), that is. The 30th Annual Family Conference is taking place this August in Colombus, Ohio and the National MPS Society…
The world was his audience, and everyone was watching. It was time to say "I have Idiopathic Pulmonary Fibrosis" If you are like most ordinary people, you are likely not familiar…
5 Tips to Maintain a Healthy, Active Lifestyle While Living With Von Willebrand Disease Von Willebrand disease (vWD) is a rare bleeding disorder, found in about 1 percent of the…
Heather Smith suffered one of the greatest losses known to humanity: the death of her firstborn son, Brandon. He was seemingly healthy until he caught a cold at six months old,…
Dysautonomia is not exactly a rare disease because it affects so many people. So, it's surprising that so little is known about this central nervous system disease, or what causes it.…
The diabetes drug pioglitazone, has an unexpected side effect that brings hope to patients with chronic granulomatous disease (CGD) and other primary immunodeficiency diseases. This drug boosts the production of ROS in…
The last thing any parent wants to hear is that their infant or child has been diagnosed with congenital myasthenia gravis, a disease that causes various degrees of weakness in the…
Living with Cushing's Disease: How Healthy Eating and Exercise Will Help Cushing's disease is a condition that occurs when there is a high amount of cortisol in your blood. This level…
There are 250+ PI Disorders Out There Primary immunodeficiency disorders were once shrouded in misinformation and a general lack of understanding. Many would argue that this is still true today…
Myasthenia gravis is an autoimmune disease of the neuromuscular system, causing muscle weakness in the voluntary muscles of your body. While the causes of myasthenia gravis aren't always understood, it is…
Happy Friday Patient Worthians! Just because Cystic Fibrosis and Lyme Disease Awareness Month is over, doesn't mean we won't stop fighting the good fight for spreading awareness about these diseases! We…
While common in much of the rest of the world, Behcet's syndrome is considered relatively rare in the United States. That offers little relief for those in the U.S. who are…
I grew up working in my dad’s retail store and he used to have a saying about customer foot-traffic: They come in bunches, like bananas. Am I the only one…
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