dolor colosal. hinchazón de mamut. Hipersensibilidad. Los cambios drásticos en la temperatura corporal. Imagínese estar en ese tipo de dolor todo el tiempo. Francamente, suena un poco como una pesadilla.…
Si las enfermedades raras estaban participando en un concurso de belleza, donde la "belleza" significa "poco conocido", "mal entendido", y "casi imposible de diagnosticar" -Ehlers-Danlos (EDS) sería a la altura…
Para muchos, como yo, las vacaciones pueden ser agridulce, ya veces duro. Todos los días, me siento agradecido por las personas que forman parte de mi vida. A veces, sin…
How would you respond if your body did not work for you but against you? What if you felt that your body was actually your enemy? For people with Ehlers-Danlos…
I read a report recently from the New England Journal of Medicine about a clinical trial and thought I’d share it with you because it’s about Fabry disease, a genetic disease…
Dolor colosal. Hinchazón gigantesca. Hipersensibilidad. Los cambios drásticos en la temperatura corporal. Imagínese estar en ese tipo de dolor todo el tiempo. Francamente, suena un poco como una pesadilla. Bueno,…
Ser diagnosticado con una enfermedad neurológica crónica puede ser reivindicación después de años de incontables especialistas visitas, pruebas e investigaciones. Sin embargo, hay todavía un tipo de período de duelo…
Síndrome de dolor central es una enfermedad neurológica de toda la vida del sistema nervioso central, lo que provoca constantes, sin fin, señales de dolor agonizante de todos los tipos…
Colossal pain. Mammoth swelling. Hypersensitivity. Drastic changes in body temperature. Imagine being in that kind of pain all the time. Frankly, it sounds a little like a nightmare. Well,…
Tis the season when gratitude is in the air (can you smell it?). Wait, that may be the pumpkin pie. Anyway, Thanksgiving is a time of reflection. A time where…
Because it's the month of #NERVEmber, we are highlighting CRPS and other nerve pain conditions. Diseases like CRPS and POTS often go unnoticed in the community at large. We are honored to bring awareness…
What if you lived with chronic pain every day of your life--and not just little "ouchie" pains, but real 8 on a scale of 1 to 10 kind of pain? Kirah DeCarlo…
After being diagnosed with a rare disease, there’s often a myriad of questions that follow: What am I going to do? What is this disease? Is it curable? And the…
Here's the scenario: a woman and a man walk into the emergency room with the same symptoms. Both have terrible pain in their abdominal region. The man is immediately brought…
Monday, November 2, was Color the World Orange Day, an initiative to help bring awareness to Complex Regional Pain Syndrome, also referred to as Reflex Sympathetic Dystrophy Syndrome (RDS). Color the World…
Being diagnosed with a chronic neurological illness can be vindication after years of countless specialist visits, tests and research. Yet, there is a still a type of bereavement period that…
It's Meme Monday, #NERVEmber, and we couldn't be happier to bring some #MondayMotivation! (Sorry about the egregious hashtags.) In case you weren't aware or you forgot to read our launch…
When you have a rare disorder like CRPS, or Complex Regional Pain Syndrome to the uninitiated, going to the emergency room can rival Alice's adventures in Wonderland. First of all, few members…
Complex Regional Pain Syndrome, or CRPS, is a chronic neurological condition that usually affects a patient's arm or leg, but can present elsewhere on the body. While the medical community cannot…
We are kicking off #NERVEmber! We are very excited to be a part of this campaign to shed some light on chronic illnesses like CRPS/RDS that can greatly effect the…
Central Pain Syndrome is a lifelong neurological disease of the Central Nervous System, which causes constant, unending, agonizing pain signals of all somatic types simultaneously. It is caused by lesions on the…
Did you know it’s NERVEmber? It all began in 2007. The Power of Pain Foundation created NERVEmber. November has become the month for the awareness of Complex Regional Pain Syndrome, or…
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