It's hard enough to find love in this world. Apps, matchmaking websites, and nosy friends can do their best to lend a hand - but at the end of the…
One teenager with Hunter syndrome doesn't let anything hold him back. This doesn't go unnoticed. Hunter syndrome is a rare inherited disorder which prevents production of a key enzyme that…
Christmas 2016 seems like a lifetime ago. In fact, I can't figure out if my hair grows twice as fast as it used to, or if time is passing at…
At the 2017 MGFA conference a panel consisting of Bruce Yelverton (Myasthenia gravis [MG] patient and retired paramedic and EMS director), Sally O'Meara (MG patient and registered nurse), and Shannon…
When your lungs aren’t getting enough oxygen, it’s a real problem. A big problem, especially, when a person is living with idiopathic pulmonary fibrosis (IPF). But that’s not the only…
Duchenne muscular dystrophy is a very serious and fatal disease that slowly destroys every muscle in the body. This rare disease affects one out of every 3,500 people and mostly…
Sometimes, the path to diagnosis takes many twists and turns. This is true for people who have Primary Biliary Cholangitis (PBC), according to Gail from the PBC Society of Canada. In this video, she…
1. On Thursday, June 1st at 12 pm EST, 11 am central, there will be a seminar by the Amyloidosis Foundation to better understand this complex disease. It will be narrated by two physicians from…
According to an article from Rare Disease Report, a brand new app has been created for sarcoidosis patients. Created by Misha Rosenbach, the app was developed in partnership with the Foundation for Sarcoidosis Research.…
12-year-old Jack Bolton has had spinal muscular atrophy (SMA) since he was born. He is confined to his wheelchair because of SMA, which causes his muscles to weaken as he…
Everyone has a story. Every person has something that they can share. Reading about another person’s story can help you and your family cope with Hunter syndrome. Also, learning about…
A few years ago, a friend of mine who is a violinist suddenly developed a movement disorder called focal dystonia. His neck began to have intermittent muscle contractions. His head would…
Andrew Graham was diagnosed in 2009 with a rare autoimmune condition called ankylosing spondylitis, or AS. This disorder primarily affects the bones in his back and causes his vertebrae to, over…
I read a rather confusing article about Esbriet, the first FDA-approved treatment for idiopathic pulmonary fibrosis (IPF), and I’d sincerely appreciate your help to make sense of it all. Let me…
I have that sinking feeling… And it’s really starting to bother me. I’ve never said this openly before but here goes: My gut tells me there’s a strange link between…
So there’s this Greek guy who happens to be suffering with frequent bouts of pain and fatigue as a result of living with sickle cell anemia (SCA). And when he…
An amyloid is an abnormal protein produced by a person's bone marrow. It builds up in the body's organs and, while rare, is very serious. The disease is called amyloidosis,…
Lynn Holman believes that her pregnancy may be the reason she got diagnosed with hereditary angioedema (HAE). At first, Lynn thought she had a bad allergic reaction one morning because…
Ever since Andrew Wakefield and his cohorts published an article in The Lancet that warned of the measles, mumps, and rubella vaccine being linked to autism and bowel obstructions, the…
Hereditary angioedema (HAE) has long been misunderstood. Many patients go for years without a proper diagnosis because the medical community knows very little about this rare condition. Part of my job…
Being married to the love of your life would mean that you know everything there is to know about one another. Physically, emotionally, and mentally. Right? Well, Gene is married…
I want you to think about spinal muscular atrophy (SMA), a genetic disease affecting the part of the nervous system that controls voluntary muscle movement. Then, think about the word: DIGNITY. Dignity…
The drug, Ceriliponase alfa from BioMarin, helped in a condition that has led inexorably to disability and death: Batten Disease – specifically CLN2. Families of kids facing this prognosis are…
Happy Friday Patient Worthians! Did you know it was World PI Week this week? We have a post on the role pets have with PI. We also have a story on a…
A special session on CGD will be presented at the 2017 IDF National conference. CGD is a primary immunodeficieny disease and is characterized by skin infections, both fungal and bacterial,…
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