Status epilepticus (SE) is a serious, problematic, frightening, and often fatal condition, relating to uncontrolled seizures that continue to happen without any type of recovery between the seizures. SE is a…
I know I’ve said it before, but whatever, I’m saying it again: 2016 has been an awful year. Both personally and globally, it’s been the total pits, to the point…
’Tis the season to indulge in the spirit of giving. And that’s Kim Fredrickson's exact intention. Kim is an author, blogger, and marriage & family therapist who was diagnosed with…
Cuando veo "Marvel" y una imagen como la siguiente ... ... Veo los ingredientes de un superhéroe! "Un equipo de investigadores en el Trinity College de Dublín ha descubierto lo…
Loss is a terrible thing. It’s heavy and overwhelming, and for me, it’s sometimes such a weight that it can be hard to lift yourself up in the morning. Yet,…
Some more good news to share for people who are living with chronic conditions such as transverse myelitis (TM), a rare condition that strikes the central nervous system as seen…
Every parent here knows that feeling of helplessness when you see your child in pain from a chronic rare disease that has no cure. Sara and her husband have experienced…
¿Sabías que hay más de 7.000 enfermedades raras, y 1 de cada 10 estadounidenses tiene uno? Cuando usted es parte de un pequeño grupo de pacientes, es difícil darse a…
Hansen's disease, formerly called leprosy, is a long-lasting bacterial infection that is treatable with antibiotics. Patients are able to recover from the infection and lead normal lives. The past, however, was…
Every year, approximately 6,000 people in the United States are diagnosed with amyotrophic lateral sclerosis, more commonly known as ALS. This disease is a degenerative condition that slowly kills off…
It saddens me that kids with juvenile idiopathic arthritis (JIA) have a tough time growing up. Unlike other kids, they live with chronic pain and stiffness, swelling, fatigue, and a…
The next time you’re having a crappy day, think of the 1000s of kids across the globe who are suffering because they have juvenile idiopathic arthritis (JIA). JIA is one…
When you’re dealing with the intense, unrelenting pain of complex regional pain syndrome (CRPS), patience can wear more than a wee bit thin. Also, it’s hard to concentrate when dealing…
Could the microbes and flora of your stomach be responsible for the lower back pain you’ve suffered from since your college years? If the latest studies are any indication, your…
Most of us know what it is like to have bad news come our way. And in the course of life, all of us will feel the sting of news…
Most people have become a little annoyed over all the strange news about the Presidential Election. I do think that many hot social issues have come up despite all the nonsense. Our country has…
A los 23 años, Jessie Brenholt debe ser ocupado planeando el resto de su vida, como el matrimonio y tener una familia. En su lugar, el graduado 2012 de Le…
Just over a week until Christmas and Hanukkah everyone! I am counting down the days until the celebrations begin with friends and family, which albeit can be stressful with chronic…
As the wild, fractious year of 2016 claws it’s way to the finish line, we could really, really, REALLY use some good news. In a year that took away so…
As someone who's supposed to take medicine at the same time every day, I'll admit it's not always easy. It's not hard per se... things just get in the way. If…
Wendy sits at the corner of a polished conference table. She’s timid by nature—a little mousy. Her voice squeaks out responses as she participates in the discussion. The conference she’s attending…
Last summer, I was sitting on my deck, reading the NY Daily News (don't judge me; I've been reading it since I was six years old), and I came upon…
Podemos estar de cara a la temporada de vacaciones, pero no hay Ho! ¡Ho! ¡Ho! en HFHo. La mayoría de la gente ni siquiera se puede decir que, por no…
It is a truth universally acknowledged that it's never easy having a rare disease. From Behcet's disease to cystinosis to idiopathic central precocious puberty, we all understand the pain, frustration, and…
What is it about inspiration? Where does it come from? If you are living with idiopathic pulmonary fibrosis (IPF), you may want to feel moved, and then to use that…
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