Eighty-five-year-old Frank Meuers considers his 500th immunoglobulin infusion to be a cause for celebration. Frank has logged details of his doctor’s visits since his first dose of replacement therapy with…
The coronavirus pandemic has significantly altered not just the world we live in, but the way we engage within this new world. It has been difficult and isolating to…
When the COVID-19 pandemic began, many people wondered how it would impact them, especially if living with a rare disease or condition. As the pandemic has progressed, more research has…
Welcome to Study of the Week from Patient Worthy. In this segment, we select a study we posted about from the previous week that we think is of particular interest…
According to a story from the Warwick Beacon, the first ever primary immunodeficiency (PI) awareness and fundraising walk in Rhode Island's history was held recently at Warwick City Park. The…
If you are the parent of a child who has a rare disease, you know how difficult it can be to explain why they can and can't do certain things.…
Los científicos han localizado descubrimiento clave en la categoría de las Enfermedades Raras Un gen que puede jugar un papel en la solución de los misterios de enfermedades autoinmunes como…
Cualquier persona diagnosticada con una enfermedad crónica tiene dos opciones. Opción 1: Vive la vida sin hacer nada y esperar a que llegue el final O Opción 2: Aprender lo…
Inmunodeficiencia Primaria y Disautonomía - Vivir con una enfermedad raraIlana Jacqueline se parece a una mujer joven perfectamente sana, pero las apariencias pueden ser engañosas. Tardó 19 años para que…
Píldoras y Parfaits: ¿Cómo probióticos podrían hacer la vida con CVID un poco más fácil. Entre las infecciones lejos demasiado frecuentes asociados con ICV y los problemas gastrointestinales recurrentes, muchos…
Conozcamos a Yoni Maisel – un paciente con una enfermedad rara, un activista y blogger. Su meta: crear conciencia sobre las enfermedades raras y ayudar a los demás a través…
Tras la obtención de un diagnóstico de una enfermedad crónica, como ICV o inmunodeficiencia variable común, es fácil sentirse abrumado. Abrumado por preguntas en su cabeza - ¿Qué hago ahora?…
El hecho de que Burger King abandonó "hazlo a tu manera" como consigna no significa que tu tengas que hacerlo! Una vez diagnosticado, viviendo con inmunodeficiencia variable común (ICV) requiere…
¿Te has preguntado qué se siente tener la Enfermedad de Inmunodeficiencia Común Variable (ICV)? Este video explora la vida del día a día desde el punto de vista de Keith…
Inmunodeficiencia Común Variable o ICV, es una enfermedad rara que afecta entre 1 en 25.000 y 1 en 50.000 personas en el mundo. Búsqueda de información sobre la condición crónica…
Dicen que una imagen vale más que mil palabras. Desplácese a través estas imágenes para una risita. ¿Quién no ama las siestas? Al pensar en lo imposible que era…
¿Y ahora qué? Llegaste al doctor para hacerte un chequeo y sales con un diagnostico que cambia tu vida entera. Sea, Distonía, Acromegalia, Angioedema Hereditario (AEH) o la enfermedad de…
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…
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…
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…
Anyone diagnosed with a chronic illness has two choices. Option 1: Accept it, live life idly, and wait to meet your maker. OR Option 2: Accept it, learn what the…
Scientists Make Key Discovery in Rare Disease Category A gene that may play a role in solving the mysteries of autoimmune diseases such as type 1 diabetes, rheumatoid arthritis, and…
Primary Immune Deficiency and Dysautonomia - Living With a Rare Disease Ilana Jacqueline looks like a perfectly healthy young woman, but looks can be deceiving. It took 19 years before…
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