When Tucker Krause was a young boy, his family noticed that he frequently got sick. More than frequently, even. In fact, when his mom really thinks about it, Tucker was…
Rare Community Profiles Rare Community Profiles is a new Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families,…
Mother of two, Mina Manchester, has been navigating raising two children with an immunocompromising disorder for four years. It's this unique experience that makes her feel more prepared and…
Body Image In today's world, negative body image is unfortunately very common. Research has shown that this trend occurs in women and men, both as children and adults. It affects…
Heather White Heather White is a 41-year-old woman who was diagnosed with common variable immune deficiency (CVID) back in 2004 after fighting frequent bouts of pneumonia. Doctors believe that she…
The 2019 IDF National Conference National Harbor, Maryland Are you a patient with primary immunodeficiency or common variable immune deficiency? Well don’t miss this important patient event. At this conference,…
As seen by her story on IDF's website, for Kayla Kuehl, her diagnosis of an extremely rare disease happened over the course of several years. It's called Common Variable Immune Deficiency…
Let's be honest - watching the news today can be a little depressing. Whether it's political scandals, human rights crises, and the usual doom-and-gloom of war and dangerous world dictators,…
We want to celebrate our patient contributors and writers for their efforts in helping the rare community, bringing awareness, understanding and compassion to often neglected disease. The following article was originally…
Candace recogió sus cartas, lanzaron "Oceans" en el fondo, y se presiona el juego cuando comenzó a grabar un video explicativo de su rara enfermedad, con frecuencia mal entendida, variable…
Olivia Trueb vive el sueño de todo adolescente. Al igual que en, ella tiene un equipo de jugadores de fútbol profesionales que se envuelve alrededor de su dedo, y para…
La enfermedad crónica puede ser difícil de explicar a su hijo. La rareza y la persistencia de la condición, así como las limitaciones que se les imponen, pueden ser difíciles…
5 Preguntas que estás cansado de oir cuando tienes ICV: "Así que tienes problema digestivos Y respiratorios? Sí. Ambas cosas. Confía en mí me quedaría con uno si pudiera.…
Amber Blair, a brave 13-year-old girl from Chowchilla, California, was born with common variable immune deficiency (CVID), but she wasn’t properly diagnosed until years later, according to Chowchilla News. She…
¿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…
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…
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…
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…
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…
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…
Olivia Trueb lives every teenage girl's dream. As in, she’s got a team of professional football players that are wrapped around her finger, and much to her surprise, she can…
How did CVID patients earn their stripes? Zebras are viewed as unique. They are only found in limited locations with specific environments; they flaunt stripes that are iconic to their…
5 Questions you’re tired of hearing when you have CVID... “So you have respiratory AND digestive issues?” Yes. Both. Trust me I’d pick one if I could. “…
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