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…
You may remember AS warrior Charis from our interview entitled "Move Over Barbie. This is the Model Little Girls Should Idolize". She discussed her journey with Ankylosing Spondylitis, detailing her…
For the last one and a half years, I’ve been taking a mindfulness meditation class to help reduce stress and have recently “graduated” to a master class, which I’m enjoying and…
Back in 2012, the Minnesota Department of Health published a helpful fact sheet on methylmalonic acidemia (MMA). What I liked about it is that it’s very straightforward and to the…
Este es el escenario: una mujer y un hombre entran a la sala de emergencia con los mismos síntomas. Ambos tienen un terrible dolor en la región abdominal. El hombre…
El hecho de que Halloween ha pasado no significa hemos terminado de hablar de la cirugía cerebral. Specifically, deep brain stimulation therapy. No, esto no es algo así como el…
Jake Conaway aprendió lo peligroso puede ser el angioedema hereditario (AEH) cuando tenía sólo siete años de edad. Fue entonces cuando su padre murió a causa de la condición genética…
Happy Friday Patient Worthians! Do you wish you can take a day off from your rare disease? What about when it seems like it's getting to be too much and…
Wilson disease is one of those conditions that creeps up on the patient. The disease causes the body to be unable to properly metabolize copper, which as a result, builds…
Central precocious puberty used to be much rarer than it is today. Doctors are seeing more and more patients who begin to develop too early, and they can't figure out…
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