Living and Traveling with Primary Immunodeficiency Okay, just because you’re living with Primary Immunodeficiency (PI), doesn’t mean that you’ve got to be a little wall flower or confine yourself to…
Hey, do you love bike riding? Competitively or otherwise? And are you going to be in the Philly area around May 7th? Then you should consider taking part in the…
Susan realized there might be more to her son’s quirks—like his inability to breast-feed, the continuous projectile vomiting, and his taking an oddly long time to drink a bottle—when a doctor said…
Los pacientes con espondilitis anquilosante pueden sufrir terribles dolores de espalda. Almohadillas térmicas son una opción fácil para ayudar a aumentar el flujo de sangre y aliviar un poco el…
Eating well can be extremely expen$ive, but its vital for healthy vitals! But when you are living with autoimmune disease and other inflammatory conditions limiting (avoiding all together for many) pro-inflammatory…
Sufre de AEH? Biofeedback Reporting puede salvar su vida! Hay muchas noticias saliendo al rededor de BioRx, una empresa nacional de la especialidad farmacéutica, con sede en Cincinnati, Ohio. Se…
Happy Passover Weekend Patient Worthians! This week Acromegaly is taking over! It's no secret that rare diseases go misdiagnosed, so in Biblical times, it's safe to say this disease when UNdiagnosed for…
We all know the saying: April showers bring May flowers. But did you know that April sharing brings May caring? May is Vasculitis Awareness Month, and the Vasculitis Foundation has…
To understand the rare disease Amyloidosis, you have to understand the underlying cause. When bone marrow produces an abnormal protein, called "amyloid," it can be deposited in virtually any organ or tissue in…
At first, I howled and wanted to tear my hair out…. I was reading an article about the problems a famous golfer was having with his putting during the PGA…
What the heck is a nanoparticle? It sounds very Twilight Zone-ish, and in some ways, nanoparticles are just that. The thing is, nanoparticles are the movers and shakers of the biologic…
Alright, folks: Get out your calendars! Or more appropriately, pull up your calendar on your phone! Now, go to May 22nd. It's a Sunday. How does your day look? Free?…
Behçet’s disease. If you’ve never heard of it, it’s a disease that causes blood vessel inflammation. If you have heard of it—or actually have Behçet’s—you’re probably well aware of the resulting…
Hay algunas enfermedades locas en el mundo de hoy, y el angioedema hereditario, o AEH, es uno de ellos. Para ver los síntomas en la acción, usted puede tener que…
Wilson Disease: the rare, autosomal (meaning it occurs in both men and women), recessive (meaning that an individual must inherit one copy of the mutated allele from each parent to…
Have you ever gone to WebMD's symptom checker for a simple pain in your stomach or a weird patch on your skin? I know I have, and more often than…
¿Cómo obtuvieron sus rayas los pacientes con ICV? Las cebras son vistos como único. Se encuentran sólo en determinados lugares con ambientes específicos; hacen alarde de rayas que son icónicos…
Toronto street artist, Victor Fraser, is on a mission—and that mission recently took him to Paris. In the wake of the November 2015 terrorist attacks that left 130 dead and…
It’s a scenario that turns veins into ice: your certified healthy infant’s belly swells to the size of a basketball and doctors say he has less than 48-hours to live.…
“Fatal granulomatous disease of childhood.” How’s that for a stunner? In a November 2012 overview article published in the medical journal Hematology/Oncology Clinics of North America (which can be found—with…
Editor's Note: Kara LaFrance is an artist and graphic designer fighting acromegaly. She had a late diagnosis at 28 which led to surgery, radiation and ongoing medication therapy. Pain is a…
I love stories where people get what’s coming to ‘em! No, I don’t mean bad-guys comeuppance stories (although I DO enjoy an occasional one). I’m talking stories of deserving individuals…
One of the toughest parts of living with Sjögren’s syndrome is you can’t always toddle down the road to your local Sjögren’s patient get-together. There are no flashing neon signs…
above photo by Sandro Georgi Photography Kristina was symptomatic when she was around 12 or 13 but she wasn’t diagnosed with narcolepsy until over a decade later at 24. She thinks…
Imagine que es un increíblemente feliz y activa 8 años de edad, que ama los deportes. Ahora imagina las rodillas y los tobillos hasta la hinchazón. Se mira hacia abajo…
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