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…
Brothers Michael, 6, and Dylan Cavalier, 4, aren’t exactly like other boys. They don’t make mud pies; they don’t jump in piles of autumn leaves; and they certainly don’t dig…
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…
Let’s blow your mind for a minute. There are approximately 7,000 different types of rare diseases, and more being discovered every day. According to Global Genes, there are 30-million people in…
Gene therapy has been talked about for quite some time, but recent news has turned a hope into a reality for babies born with adenosine deaminase (ADA)-deficient SCID, severe combined…
Doctor, please take my baby's blood! The IDF encourages Louisiana state officials to sign into law routine screenings of newborns for SCID, or Severe Combined Immune Deficiency. The IDF's ultimate goal is to…
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…
When I joined millions of other obsessed fans who watched what’s become the wildly popular “Bubble Boy” episode on Seinfeld back in 1992, I had no idea there was a shred…
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…
We are kicking off #NERVEmber! We are very excited to be a part of this campaign to shed some light on chronic illnesses like CRPS/RDS that can greatly effect the…
I’ve found that through all of this, my son has started asking, ‘How can I help? What can I do?’ In a way, those are the very things the Immune…
The words “happy” and “healthy”—it’s what every parent wants to hear after the birth of their child. Clayton’s parents were no exception. In a Youtube video by Hopkin's children, Clayton's…
Recently, the Immune Deficiency Foundation (IDF) was invited to try for a grant sponsored by PI CONNECT. The grant would allow the IDF to study the compared effectiveness of antibiotic treatment for…
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…
What gets teens more hyped than watching someone get a pie in the face!? Apparently, nothing! At least, Joseph Maronski and Madison Shaw seemed to think that was a pretty solid…
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…
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