Here’s a story that serves as a sobering reminder of how genetic diseases can lay dormant and undetected for years, and how quickly they can come roaring to life… with…
Panuveitis refers to generalized inflammation of the uveal tract, the retina, and vitreous humor; in other words, all parts of the eye. Most cases have no known cause, but some…
After watching another YouTube video on fatty liver disease, I’m on a tear, specifically in addressing two types: First: Non-alcoholic fatty liver disease, which is also known as NAFLD and…
Are you a concerned parent or loved one of a child who has Juvenile Idiopathic Arthritis (JIA)? Well, you’ve come to the right place! I read such an uplifting online…
Es injusto, pero Hollywood cree que la narcolepsia es divertido. Una y otra vez, los personajes que sufren de este trastorno neurológico raro son retratados como bufones, cayendo la cara…
Whenever we’re struggling with something, we assume we are alone. We feel like we are the only ones. But in September of 1997, a small group of Friedreich’s ataxia (FA)…
When most people hear about scientists messing around with genetic manipulation, they think of the antagonist of a comic book trying to make super soldiers. But, that’s not what geneticists…
It’s always heartening to see scientists take up research in therapeutic areas that are under served and poorly understood. And when their research yields positive results, it’s downright amazing. Honestly,…
Are you living with primary sclerosing cholangitis (PSC) and looking for a suggestion on dietary improvements? If so, there may be help navigating your options (I know there are many). I…
If you or your loved one suspect you may have transverse myelitis (TM) you need to get to a doctor right away. TM is a serious neurological condition that requires…
El 90-95% de las personas que viven con la sarcoidosis, la enfermedad afecta a los pulmones. A medida que crecen granulomas a través de los órganos, que pueden experimentar tos,…
There is an interesting article that I think the transverse myelitis (TM) Community needs to read, posted on Mobility Management. It was a real eye-opener for me – it brings…
It's time to lift a very rare condition called Non-24 Sleep-Wake Disorder, or Non-24, from the shadows so that those who are living with it can be better understood. For…
Well, this is the perfect case of having too much technical, clinical information for some, but not being able to completely comprehend what’s going on--for those of us who don't have…
If you, or a member of your family, is affected by a congenital disorder of glycosylation, or CDG, you are most likely familiar with the terms, definitions, and physical impact…
Lambert-Eaton myasthenic syndrome (LEMS) is an autoimmune disorder that affects the patient's pelvic and thigh muscles, gradually weakening them. It's closely tied with small cell lung cancer because it affects…
¿Qué hicieron el magnate naviero griego Aristóteles Onassis, el actor ganador de un Oscar Sir Lawrence Olivier, y una niña de cuatro años llamada Hattie, tienen en común? Todos ellos…
The history of the world stands on the importance of community. No sole genius alters the pages of time without some kind of support group, and the Parent Stories from…
I met a woman at a patient conference last year who confided she had just been diagnosed with narcolepsy. She said because she knew next to nothing about the disorder, she…
Postural orthostatic tachycardia syndrome does not exactly roll off the tongue, so most people refer to it as POTS. It's characterized by a sudden change of blood pressure that happens…
How do you feel about your life today? Are you living every day in exuberance? Do you love what you’re doing? Are you excited every single moment? Are you looking…
If we can accomplish big dreams, why wouldn’t we go after them? Just like Hannah Aspden of Raleigh, who was born without her left leg and lives with postural orthostatic…
¿Quién sabía que la distonía y tenis van mano a mano ?! Por veinte años de edad, Josh, es un partido en el cielo. Él ha estado fascinado con tenis…
Maybe we should chart our own course in life like one sweet baby girl who was born with a rare skin disease called Epidermolysis Bullosa. Little Joella lives with the…
The above photo is of Kristina by Sandro Georgi Photography. Check out Kristina's story of living with narcolepsy by clicking here. If you visit Patient Worthy or our Facebook page, then…
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