"Estoy cansado de morir y temo que estaré muriendo por el resto de mi vida". Esta es una verdad poderosa para cualquier persona que trate día a día con una…
¿Qué se hace con 180 minutos? Piense en esto por sólo 1 minuto ... Ahora, dedique 1 minuto más viendo el vídeo a continuación. Para los cerca de 30.000 personas…
Sometimes a video speaks VOLUMES more than mere words. Maybe that’s why Kaleigh McCormick decided to make a video about her life with Ehlers-Danlos syndrome (EDS). Maybe she made the…
How much do I love that there’s a Pinterest page called 1000+ Ideas About Ehlers-Danlos Syndrome Products?!? Way to go, EDS community for sharing info, ideas, and support! I found…
Props to medical professionals who make the effort to be approachable—and sometimes entertaining. A lot of us appreciate your efforts—even when they just come off as awkward. These two physical…
Carri Levy’s article about a New Jersey couple John and Amanda Miller, is one of many articles and blogs I’ve read about the Millers; it’s really struck a chord with…
Listen up, people! This is important—especially if you’re an expectant mother! This article featuring a video in Rare Disease Report, is about an incredible mom named Amanda Miller and her son, Evan. Evan…
It’s a scenario that turns veins into ice: your certified healthy infant’s belly swells to the size of a basketball and doctors say he has less than 48-hours to live.…
Dee Daud suffers from an extremely severe case of narcolepsy. Even walking his dog, which he tries to do three times a day, can turn into an emergency. He will…
Shortly after Joshua Holdner was born, he entered into a fight for his life. He had a hard time nursing, and when he did eat, it was quickly followed with…
Leanna Mullen knows what it's like to look absolutely normal while in reality being very sick. She has Gaucher disease, a rare inherited condition where the body can't break down…
Are you a caregiver or support person of someone with a rare disease? If so, then you know the profound effect chronic illness like Lyme can have on the patient and…
Myasthenia gravis (which is Greek for "grave muscle weakness") is a neurological disease that causes a person's voluntary muscles to weaken. It mainly affects women under 40 years old and men…
If you have familial hypercholesterolemia, or FH, having a doctor who truly understands the disorder is essential. In a short YouTube video, Katherine Wilemon, president of the FH Foundation offers some…
What would you do if you were the parent of a 5-year-old who is diagnosed with an extremely rare, incurable disease that causes vision and hearing loss, various neurological dysfunctions…
You know a person living with a chronic illness is giving you the REAL story when, after being asked, “What does your Cushing’s disease affect?” she (in this case the…
Sam Bradley hit the dystonia jackpot, but that's not a good thing. Bradley won the NCAA record for the quickest (wrestling) pin in college, and is a black belt in karate,…
What do you do with 180 minutes? Think about it for just 1 minute... Now, spend 1 more minute watching the video below. For the some 30,000 people living with CF, days…
"I’m tired of dying and I fear I’ll be dying for the rest of my life.” This is a powerful truth for anyone dealing day-to-day with a chronic condition, but…
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