I’ve been known to doze off occasionally at odd times. My dad does this and so did my grandfather. And I know that's one of the symptoms of narcolepsy. My…
If you want to learn more about cryopyrin-associated periodic syndromes (CAPS), but don't know where to go, have no fear! We have found the perfect place for you! Systemic Autoinflammatory…
Cuando se le diagnostica la espondilitis anquilosante (EA), la última cosa que quiere hacer es trabajar a cabo. A menos que, por supuesto, usted es Nate Lewnes. Nate ya no…
Colleen and Sam were shocked when their sweet baby girl, Quinn, was born a few weeks early. She weighed only 3 lbs 6oz and was immediately taken to the neonatal…
There’s a CRPS clinical trial being listed on Craigslist. Not kidding. You can check it out here. Now, am I the only one who finds that really odd? When I…
Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s Disease, is a degenerative motor neuron disease. Most of us have heard of it in large part due to the awareness…
I read an amazingly interesting article about a guy, who is living with Type ll diabetes and was diagnosed with non-alcoholic fatty liver disease (NAFLD). Seems he’s been through hell and…
A urea cycle disorder occurs when the body can't break down the ammonia that amino acids produce. Unchecked, ammonia is toxic. According to the National Urea Cycle Disorders Foundation, there…
Ser diagnosticado con una enfermedad neurológica crónica puede ser vindicación después de años de incontables visitas de especialistas, pruebas e investigaciones. Sin embargo, existe todavía un tipo de período de…
I cannot get enough inspiration from Moms and Dads who are heroically trying to find answers when their children are sick—and doctors are scratching their heads! I read about a…
Ya know that “I’ve Fallen & I Can’t Get Up" joke? When you have postural tachycardia syndrome (POTS), jokes like that wear thin really, really, REALLY fast. What is POTS? Have…
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.…
To read part 1 of Teresa's post, click here. The sooner you treat [during an HAE attack], the better HAE meds work! The second stage of attacks is the swelling that is…
I saw a quote, recently, that resonated with me. It said: "I fight for my health every day, in ways most people don't understand. I'm not lazy. I'M A WARRIOR." Dealing…
Si usted o su ser querido está viviendo con una enfermedad crónica rara, probablemente ha pasado por las diversas etapas del duelo: negación, ira, depresión, negociación, y es de esperar…
Eventually, we reach a place in life where making a meaningful impact in the world becomes a motivating force. We know we’re there when we simply want to make something…
If you suffer from complex regional pain syndrome, or CRPS, you know the value of effective pain management--because without it, life kind of grinds to a halt. Unfortunately, many of…
Child development is natural and to be expected. Parents look forward to these milestone moments and usually remember every detail from these times. First word. First steps. One after the…
First described in 1882 by Heinrich Quincke, angioedema was regarded for more than one century as a rare disease. Subsequently, it was established that the hereditary form of the disease…
Mast cells are produced by bone marrow and are part of all tissues in the body. They are regulators of the immune system that contain storage sacs that contain active…
"Me gustaría que la gente simplemente tomar cinco minutos para buscar el síndrome de Ehlers-Danlos para crear conciencia." Estas son las palabras de 15 años de edad, Mya Lilly Hurst,…
The courage and persistence to keep going, past hurdles and obstacles, is powered by purpose, and for one woman living with Pompe disease, her purpose is to overcome barriers to…
If you are considering having children, it’s wise to consult with a genetic counselor for screening and testing before conception. Here’s why: there is a plethora of deadly and/or seriously…
Life can be overwhelming, especially when living with complex regional pain syndrome (CRPS). The continual pressure to look good, to perform well, and to compete for wealth and affection creates…
When a fetus inherits a mutated copy of the TFAP2B gene, the development of the heart, face and arms and legs is affected. As a result, when the infant is…
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