CFRI's third annual Embrace Retreat is happening May 5th - May 7th! The Embrace Retreat is specifically geared toward mothers of children and adults battling cystic fibrosis. Just in time…
Here at Patient Worthy, we aim to bring you rare patient news. It might not always be the news you want to hear, but it’s important nonetheless. Today’s dose of…
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…
Have you ever heard a word and not known what it was? That happens to me all the time. I hear something, I think it sounds like something else, and…
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…
Oh here’s an article that really grabbed my FREAKING attention about a 20-something Chinese woman who is living with narcolepsy. She has chosen not to take medications for her narcolepsy…
For any number of reasons, we feel ill but decide that it's something innocuous. It might be that tickle in the back of your throat, causing those innocent little coughs…
Mark your calendars because World Parkinson's Day is here!! Winter is (mostly) over and spring is hot (emphasis on hot) on it's heels! And, of course, April showers means we're…
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…
Duchenne muscular dystrophy (DMD) is a particularly cruel genetic disease. It most commonly affects boys, who by the age of three, begin to experience muscle weakness in the legs, hips…
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…
FAiRE is a clinical study program for children and young adults with Dravet syndrome. On their website, they provide information and an opportunity to get involved and be a study…
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,…
Sickle cell anemia is caused by abnormal hemoglobin, which is the protein that allows oxygen to stick to red blood cells (RBC) and travel throughout the body. This causes bone…
Clinical immunology is a biomedical branch of science that studies the immune systems of all living things, including people. It is through such studies that great advances in medicine have…
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…
At first the running was exercise, a way to lose a few pounds. Running soon became the way Beth Markesino forgot her diagnosis of trigeminal neuralgia (TN) – the way…
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…
When it comes to talking about families, there is a one-of-a-kind love between siblings. A form of admiration that only siblings can understand. At the end of the day, the…
My dad is devoted to the people he loves. I can’t tell you how many times I’ve heard, “You should always honor your family.” I’m probably not as generous a…
In a scene reminiscent of the wildly popular TV series House, real life medical researchers solved a PI mystery that plagued one family for over four decades. Members of this…
What is the perfect way to spend a Saturday? Well, if you are a fishing enthusiast and enjoy raising money for a cause I have the perfect event for you.…
Here, in the United States, just thinking about April 15th is enough to give you the heebie-jeebies. Of course, I'm talking about the deadline for filing our federal income taxes.…
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