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…
Approximately one million people worldwide have been diagnosed with tuberous sclerosis complex (TSC), a condition where non-cancerous tumors and other lesions grow most commonly in the kidneys, heart, lungs, skin and…
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…
What comes to mind when you hear "palliative care?" Most people might think it only helps someone with end-of-life care. But did you know that palliative care can actually lift spirits…
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…
The Sjogren's Syndrome Foundation wants to spread awareness on this condition. The Foundation, alongside its members and volunteers, wants to use its platform to educate people about the Sjogren's syndrome.…
The On Tap for TS event is Saturday April 1, 2017 from 4 - 8 pm to benefit tuberous sclerosis complex (TSC) and autism research. It will be at BadWolf…
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,…
Inspiration is something we all need from time to time. Feeling down? Lost your way? Bored? Perhaps you’ve taken a knock and feel rather negative about life. Whatever you feel…
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…
Here's some good news for the day: According to nutritionist Dr. Keith Pearson, there is ample evidence that cinnamon helps to lower blood sugar and fight diabetes! Let's go over…
If you haven't yet, check out our post here on how cinnamon can help lower your blood sugar. And to that point - spices are the very embodiment of "big…
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…
The image of a scientist conducting research on himself is a plot element in most superhero stories, as well as the classic Robert Louis Stevenson novella Strange Case of Dr.…
The artist's medium? Wood, mirrors, and various other materials. His art? Jarring and beautiful headpieces—Tiago Valente's way of understanding his own experience with dystonia. Tiago called it facial dystonia, and from…
Alright, here's a little secret. Don't tell anyone, okay? Promise? Great, here it is: Carbs are delicious. I mean, so so so good. And throughout the last few decades we've…
What would you do if you felt an overpowering urge to nod off? For most people, I think we would just go to sleep. It’s relatively easy to find a…
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…
Have you ever felt woozy when you stood up? And maybe it was so bad you actually fainted. One possibility is you have a form of dysautonomia called postural orthostatic…
Huntington's disease (HD) is one of those rare diseases that prior to diagnosis feels like a coin toss. Will you get it? Will it pass you by? It's a genetic…
Some memories come to mind so vividly you remember every sensation: the smells, the sights, the sounds, the feelings. For me, many of my most vivid childhood memories involve the…
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