When you think of a physical therapist, you typically think of a person that will help with treating injuries. Or you think of them a movement specialists. Surprisingly, physical therapists…
Liver disease has many causes and last month, March was Liver Disease Awareness month in Canada. Yes, Canada. That country with the handsomest Prime Minister... ever. (*Sigh*) But I digress. In…
Did you know that approximately 30 percent of adult Americans have a somewhat benign liver disorder that could turn into liver failure and lead to an untimely death? Nonalcoholic fatty…
There's a very funny scene in an old Monty Python movie that shows a body collector calling, "Bring out your dead... Bring out your dead." He heaves another body onto…
One of the first things many people do after being diagnosed with a rare disease is search online to find out more about it. I know that is exactly what…
Let's be honest - watching the news today can be a little depressing. Whether it's political scandals, human rights crises, and the usual doom-and-gloom of war and dangerous world dictators,…
A short list of abilities that we take for granted: going shopping playing basketball sitting up in a chair walking to the restroom when the urge strikes reaching out and grabbing…
Happy Friday Patient Worthians! April is Sjogren's Awareness Month! There was also a whole day dedicated to Bohring-Opitz Syndrome. The MDS Foundation has another upcoming event as well. Lastly, last month…
Sometimes… just sometimes, dads get a bad rap. Think about all the mommy blogs out there to empower, to share, and even at times, to vent about the life and…
Some scientific breakthroughs, while exciting, require a calm, measured response. Most, make that all, demand repetition and duplication, as per the scientific method. But there are a select few that,…
Who could be against the health and well-being of newborn babies? Surely, not any decent human being. Babies come into this world in an incredibly vulnerable state. They have essentially…
Tomorrow is Bohring-Opitz Syndrome (BOS) Awareness Day! If that illness doesn't sound familiar to you - you're not alone. BOS is a very rare disorder; so rare that estimates number at…
Think of it as a mashup between a standard swimming cap and the Cerebro device Professor Xavier uses in the X-Men series. Whatever you want to call it, you should…
Jamie has been living with Tourette syndrome, so bad that she was not able to perform many of her daily activities. She would often avoid going to places outside of her…
A clinical trial is up for those suffering from Duchenne Muscular Dystrophy. An oral tablet called Idebenone will be compared to a placebo, to see if it is safe and…
Upcoming event made possible by the MDS Foundation! Whether you are a newly diagnosed patient, a long-term survivor, or a caregiver, this event will give you the opportunity to learn…
In reading about various diseases, I sometimes find that the content reads like alphabet soup. Sometimes, it’s helpful to simplify and clarify. To get down to the basics. April is…
Welcome back Patient Worthians! This week we have some exciting news for the MS community. Additionally, we have some great tips on how to build your CF dream team. Also,…
The Tuberous Sclerosis Alliance works to bring awareness to tuberous sclerosis complex (TSC). They also work to raise funds for TSC. Over the years, some of the greatest in the…
Vertex Pharmaceuticals announced that two phase 3 studies involving a combination of tezacaftor / ivacaftor improved the lung function in cystic fibrosis patients that are 12 and older, with the F508del…
Royalty, murder, lots and lots of blood – sounds like elements from the plot of a Victorian-era thriller. Actually, this story comes straight from hemophilia history. Science Magazine published a…
How long can you live without your heart? How long without your liver? Your spleen? Your lungs? A woman in Canada learned the answer to that last one. Melissa needed…
In two weeks, Ocrevus will be available to those suffering from both relapsing-remitting Multiple Sclerosis (MS), the most common form, and primary progressive MS, which affects about 10 to 15…
The World Alliance of Pituitary Organizations unites the pituitary patient community and as one of our partners, they sent us their latest newsletter! In it, you can read the chairperson's report,…
When your child is diagnosed with Tay-Sachs, what should you do? How should you cope? A baby with Tay-Sachs disease appears healthy at birth and seems to be developing normally…
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