Raise your hand if you've called out sick from work or stayed home from school for something as simple as the common cold? Well, I'm just going to assume most of…
Cheryl Jackson lived most of her life not knowing why she was chronically ill. She had recurring sinus infections, bronchitis, and pneumonia. In her 40s she experienced GI issues that forced her…
It’s a terrible thing to lose someone. There’s no getting around that. But some people can take loss and find new purpose. For Eric Marder’s family, that purpose became Eric’s…
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…
"I AM FEELING LIKE I MAY NOT EVER MAKE A DIFFERENCE." Through the power of the Internet (blogs, videos, message boards, or what have you) those living with rare diseases have the…
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…
A weakened immune system doesn’t have to stop the fun, that’s for sure. The Immune Deficiency Foundation will hold two Teen Escapes this summer— an awesome weekend away for teens…
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…
Back to our interview with Mary! Miss the first part? Click here. Mary:- "I think education is power and the more you know about your disease process the more prepared…
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…
When browsing through Tumblr or scrolling past tweets have you ever found yourself asking, "What is a spoonie?" It's time to find out. First of all, a spoonie is a…
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…
Cuando te encuentras navegando Tumblr o desplazando paso los tweets, nunca te preguntas, ¿Que es un Spoonie?, bueno pues es hora de saber. Primero que nada, un “Spoonie” es un…
¿Dedo Mutilado? ¿Contusión ósea severa? ¿Espalda rota? No, este no es un catálogo de lesiones de El Club de la Lucha – estas son algunas de las lesiones que el…
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…
Hospitals are germ-ridden, bacteria-infested places. Hospital-acquired infections—especially staph infections—are known to be a leading cause of death among hospitalized patients. For those of us with immune systems compromised by chronic illnesses…
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…
Meme Monday has been taken over by some of the most treacherous monsters of Halloween and Hollywood lore. All week we are profiling each monster that has tied us all…
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…
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