There is an old proverb that all sailors know: You can’t control the wind, but you can adjust the sails. Living with persistent, incurable diseases and/or chronic pain is a…
Stephen Mitchell was losing his fight with IPF about five years ago. He began running because he did not want to die of a lung disease, like his father. Although…
When Louis Mendiola was a young man, he served our country as a soldier in Vietnam. Years later, Mendiola, now 62 years old, had another fight on his hands: He…
The word adrenoleukodystrophy doesn't exactly roll off the tongue, does it? Adrenoleukodystrophy (ALD) is an exceptionally rare genetic disease that affects one in 18,000 males. If you're one of those 18,000 people,…
May 15th is TSC Global Awareness Day! Tuberous Sclerosis Complex (TSC) is defined as an inherited disorder that causes tumors to develop in vital organs. One million people worldwide are…
A few days ago on April 10, 2017, a terrible tragedy took place in San Bernadino, California. An angry gunman entered a special education classroom in North Park Elementary School and…
After watching a rather “dry” physician, a pulmonologist (I presume) on a video (you can watch it here), I felt like there was more to be had. This goes beyond…
When the pain and muscles contractions from my dystonia were at their worst for me (see above), it significantly limited what I could do. For years I characterized dystonia and…
G-M-O. Three letters guaranteed to spark lively, if not heated, debate amongst lifelong friends. These three letters, of course, stand for "genetically modified organisms." Why are they so controversial? Why…
Greece, Italy, Egypt, Costa Rica, Dominican Republic, Mexico, Wales, Scotland, Ireland – these are all countries the Beaulieu family has explored. And the family has explored them all in the…
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…
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