April is National Primary Immunodeficiency Awareness Month! So this April, join with the IDF, in partnership with World PI Week, celebrated April 22 to 29, to promote awareness of primary…
¿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…
Hello Again Patient Worthians! This week we are highlighting part TWO of a story about a man with cystic fibrosis, racing for his non-profit RaceCF and to spread awareness of exercise therapy…
Imagine, if you will, that you've just been diagnosed with common variable immune deficiency, or CVID. The doctor has answered your most basic questions, and now you're on your way…
Candace recogió sus cartas, lanzaron "Oceans" en el fondo, y apretó el juego cuando comenzó a grabar un video explicativo de su rara enfermedad con frecuencia mal entendida, de Inmunodeficiencia…
Every so often, actually more often then we'd like to think, the "suits" at health insurance companies sit down in their oak-lined board rooms and start flipping coins to see…
Soy Charlie, un joven de 27 años de edad, trabajando en marketing digital en Auckland, Nueva Zelanda. Soy un gran fan de un buen café, buena cerveza, buen vino, buena…
Mary Vicencia knows what it’s like to be sick as a dog. For a while, she was basically an expert in feeling downright bad. In fact, she’s a lot like…
There really ought to be a Walk of Fame for people who have rare diseases. Possible categories might be: “Number of Misdiagnoses I Survived” or “Number of Doctors Who Thought…
Mary is a former registered nurse, a mother to four daughters, a wife, and a grandmother to one grandson as well as several “grandpets”. She’s an avid gardener; growing cherry…
Expert knowledge, however indispensable, is no substitute for a generous and comprehending outlook upon the human story with all its sadness and with all its unquenchable hope.” -Winston Churchill We…
Meet one of the latest Immune Deficiency Foundation (IDF) Teen Council members, Baylee Gregory! Baylee was diagnosed with Combined Variable Immune Deficiency (CVID). Though any diagnosis is difficult, Baylee is…
If you’re a regular PatientWorthy reader, chances are you’ve been on the receiving end of this loaded statement from at least one doctor: “We’re going to need to run some…
Amanda and Emily Gale are twin sisters who have never let primary immunodeficiency diseases (PI) stop them from achieving at the highest levels--literally. As reported on the Immune Deficiency Foundation's…
Bronchiectasis is a condition which damages the airways leading in and out of the lungs, stripping them of their mucus-clearing capabilities. Common variable immune deficiency (or CVID) is an immune…
In case you didn’t know, October 11-17, 2015 marks the third anniversary of commemorating International Plasma Awareness Week. Sure, you might think that it’s just another ho-hum “awareness week” but…
Having a rare disease sucks, but sometimes it helps to cut your disease down to size mentally--especially if you can't do it physically! And, hey, laughing is better than crying,…
In this account, from Philly.com, Dr. Thomas Klein, allergist and immunologist, describes his problem. A mystery had come across his path that he didn't think he could solve. He was seeing…
Candace gathered her cards, launched "Oceans" in the background, and pressed play as she began to record a video explanation of her rare, frequently misunderstood disease, Common Variable Immune Deficiency…
I'm Charlie, a 27 year old working in digital marketing in Auckland, NZ. I'm a big fan of good coffee, good beer, good wine, good food - and lots of it! I…
C’mon needlephobes—you know who you are! Every family has one—and it’s okay. Breathe… Whether or not you or your loved one is a die-hard needlephobe, you’re probably not reading this…
Autoimmune diseases: Can't live with 'em; can't cure 'em... which is unfortunate when according to The Children's Hospital of Philadelphia, seven to 10 percent of the population in the Western…
Amanda lucho durante muchos años para comprender cuál era la razón detrás de las hinchazones y el dolor que experimentaba frecuentemente. Sus doctores no sabían que le pasaba y ella…
Grab your mask and cape because superheroes are keeping the hope alive for Jonah Aregood, a nine-year-old Common Variable Immune Deficiency (CVID) patient. Hometownstations.com reports a local comic book store…
How much do you hate having to watch your common variable immune deficiency (CVID) child infuse? It’s heart wrenching, not to mention, exhausting dealing with the push back from children who…
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