She's young. She's beautiful. And she's living with short bowel syndrome, or SBS. Shante Smith was born with SBS, a disease that renders it difficult for the body to absorb and…
It takes an average of seven years for a patient with a rare disease like severe combined immunodeficiency (SCID) to receive a correct diagnosis; and that comes after the patient…
According to Hershel Raff, Ph.D, a professor of medicine at the Medical College of Wisconsin, Cushing syndrome is one of the most difficult diseases to diagnose. Raff maintains that by using a…
If you have acromegaly, you know that available treatment options are very limited, so when Chiasma, a pharmaceutical company based in Waltham, Massachusetts, received notification that the FDA was not…
Those of us with Gaucher disease who know how much uncertainty, fear, and anger enzyme replacement treatment (ERT) shortages cause, REJOICE! Researchers have found that the oral substrate reduction therapy…
Usted no va a venir a través de demasiadas personas en sus vidas como Elaine Gómez y su hija, Michelle DeMont. Y es probable que no se encontrará con el…
Could the study of Alzheimer's disease lead to treatments for GLUT1 deficiency syndrome? It's been known for a while that there's a link between Alzheimer's and how the brain metabolizes…
Recently, a friend shared her concern for a colleague whose child is suffering from a rare disease called Muckle Wells Syndrome (MWS), a form of Cryopyrin-associated-periodic-syndrome (CAPS). The story prompted…
If you're living with thrombocytopenia (that is, a severely low level of platelets in your blood), then Dr. Mei X. Wu may be your new best friend. The associate professor…
Describing your acromegaly isn’t easy. I’m sure you’ve been met with enough blank stares or uncomfortable jokes about “giants” to last a lifetime. Fact is, sometimes people will not get…
Bernie Mac was one of my favorite comedians. He grew up on the south side of Chicago, financially poor but determined to rise above his tough beginnings. "I didn't have to…
De acuerdo, Dr.House: Tenemos padres por primera vez que afirman su recién nacido es "irritable, inquieto, vómitos explosivos, y se niega a comer." Aunque también decir que el niño tiene…
Uno pensaría que en el mundo actual de la tecnología, estaríamos delante de la curva, especialmente cuando se refiere a las pruebas de diagnóstico / pronóstico. Lo que pasa descubrimiento…
En este momento, usted y yo estamos justo en el medio de uno de los más grandes de la historia las edades de información. Tenemos más formas de aprender sobre…
Happy Weekend Before the Election Patient Worthians! Get some rest, Tuesday is going to be a big one in the United States. But while you're hanging out, check out these…
Cystinosis is a metabolic disease in which the amino acid cystine crystallizes and then begins to accumulate in the kidneys, eyes, liver, and white blood cells. Children are typically diagnosed…
In the case of an emergency, we're all taught to dial 911. We all assume that the police, firemen, or EMTs will be able to help us. But what if…
It’s about one month into school starting and the morning routine is starting to feel and look all too familiar. A family scramble, and my voice echoes the same commands…
First of all, many people have experienced a nose bleed at some point. A nose bleed is a very common annoyance for many. These people typically just brush it off as something…
On the surface, it seems self-evident that social collaboration can have a positive impact--especially when it comes to Duchenne muscular dystrophy (DMD). Working together with all invested participants to influence…
I am completely BAFFLED About Addison’s disease! Are you?! You Should be! It’s Monday night, and I’m sitting—rather, lounging on the sofa, feeling baffled after reading a post from a…
Para los padres de niños con distonía, que la frustración es una realidad horrible, en curso. Los padres como Melissa Phelps de Gallaten, Kentucky lo sabe muy bien hijas-Madison y…
Don't let things as important as tenderness and compassion ever be mistaken for weakness or fragility!
Sociologist Georg Simmel, calls Gratitude the “ moral memory of mankind”. But researchers tell us that gratitude is more than a moral or ethical acknowledgement of help of some kind.…
In my humble opinion, the Urology Care Foundation has set the standard when it comes to providing factual information about Cushing’s syndrome (CS). And if you or your loved one…
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