Welcome to this week's Editor's Choice! When you have a rare disease like dystonia, you come across a ton of different reactions from people in regards to your illness. One…
No doubt there's strength in numbers. Maybe your family friends offer unending support that boosts you when you're low. Maybe you participate in a local support group or are part…
Featured Image is by Gavin Whitner at musicoomph.com. Dude, I’m sorry but this narcolepsy video needs way more than 90-some views. Posted on Grey Alquist’s YouTube channel, two young man made…
Imagine being 16 years old, and instead of meeting cute girls, going out with friends, and going to parties that get busted, you have to manage a rare, chronic condition…
When it comes to science and medicine, big things seldom come in big packages (get your minds out of the gutter). Groundbreaking discoveries that change our understanding of a disease…
dedo mutilado? contusión ósea severa? Fractura en la espalda? No, esto no es un catálogo de las lesiones del club de la lucha, éstas son algunas lesiones reales el Miami…
Most people know that high cholesterol is a ticking time bomb, and that it’s important to eat heart healthy foods low in saturated fat and cholesterol. Public health awareness—and the…
Kim Pimley is a mover and shaker, a businesswoman on the go. She’s one of those energetic people you see running up an escalator, to save time, and also, just…
September is IPF Awareness Month. A great way to raise awareness is by engaging your community. Write a letter to the editor of your local newspaper and share your story…
With rare disease, everyone is familiar with the concept that early diagnosis typically means better patient outcomes. Such is the case with acromegaly. According to a recent article in healio,…
Kallman syndrome is a condition in which puberty is delayed or completely absent from the individual. According to the NIH, it effects just one out of every 10,000 to 86,000…
Hipercolesterolemia familiar heterocigótica (o HeFH), nunca has oído hablar de él? Es un bocado. Es también una condición que hace que los niveles de colesterol de alta peligrosidad y, si…
Carcinoid tumors are rare and most often occur in the lungs and intestinal tract. When they secrete chemicals into the blood stream, the follow symptoms may occur: skin flushing, facial…
This summer, while visiting friends in Chicago, I met the most amazing woman Angie. She was out for the first time since she had her beautiful daughter, so we looked…
Broken crayons still color an regardless of whatever part of your body is not cooperating with you, you are not any less beautiful, purposeful, and important. The colors of your…
According to a recent study, patients who were previously treated for acromegaly were at an increased risk for bone fractures after being treated with growth hormones for six years. Scientists at VU…
The Dystrophic Epidermolysis Bullosa Research Association of America (Debra) describes EB as "The Worst Disease You've Never Heard Of". It's a painful disease without a cure and it's rarity makes…
¿Alguna vez has oído hablar de la deficiencia de Glut1? Basada en una historia ofrecida en News-Medical, y no tenían los padres de su hija diagnosticadaa los 4 años de…
Emma Gaul’s story is a good reminder of how quickly life’s plans can change when your body turns against itself. Less than two years ago she was a vibrant and…
My brain is CRAZY! At least, that’s the way I feel. I cannot explain how infuriating it is to have what I refer to as, a dystonia brain! So, what’s…
Idiopathic Pulmonary Fibrosis or IPF is a disease where the tissue in the lungs becomes scarred and stiff making it harder for a person to breathe. When the tissue thickens the…
When I was 14 or 15 years old, my father was deployed and the family was a little anxious say the least. That's why, when I woke up one spring…
As someone who went through long-term antibiotic treatment, I can speak to the tremendous financial strain it had on my family. Well, if you live in Massachusetts, new legislative action…
Glucosa. Esto significa que el azúcar, ¿verdad? Está en su cuerpo, ¿verdad? Pero, ¿cómo se transportan y cómo sabe que su cuerpo la cantidad que necesita para el transporte? Lo…
Last night as part of my boyfriend’s birthday gift, we attended a St. Paul Saints’ baseball game in downtown St. Paul, Minnesota. Anyone who knows me even a little bit…
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