Hold the phone! Hold. Wait. Uhhhh am I reading this right? There is a mom, who seems to have good intentions, a mom who clearly loves her young daughter who…
Tyrosinemia is an inherited metabolic disorder that inhibits the body’s ability to process or break down essential amino acids found in common foods that are consumed. Tyrosinemia Type 1 attacks…
The first MDS patient forum of 2017 is fast approaching! The forum is sponsored by the MDS Foundation is completely free for you! Just don't forget to register. The event…
I can honestly say that I have never gone to a doctor’s appointment and remembered everything I wanted to ask—not even when the appointment is the most basic of physicals.…
Meet Emily Deaton, de 21 años, de Mechanicsville, Virginia. Al igual que muchas personas con enfermedades invisibles, el viaje de Emily a un diagnóstico preciso era más de una pesadilla…
La enfermedad y la depresión. Con demasiada frecuencia, después de haber sido diagnosticado con una enfermedad crónica, los pacientes se dan por vencidos. Se retiran. Ellos dejan de intentarlo. Ellos…
Me encanta postres. Su "destacado" escrito al revés. Sólo hay algo para aliviar el de ser capaz de hundir sus dientes en algo dulce. Pero cuando se les diagnostica una…
Did you know that sickle cell disease occurs in one out of 150 Jamaican births? This is a very high risk of having SCD in comparison to African-Americans, where one…
Welcome back to Editor's Choice Patient Worthians! This week we have a story on some awesome rockers that are helping out the POTS community. We also have a sweet TEDx talk…
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…
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,…
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…
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…
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…
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