I just watched a YouTube video, posted by a sweet red-headed, freckly-faced teenager, who is living with neuromyelitis optica (NMO). NMO is a rare autoimmune, demyelinating disease that attacks people…
Multiple system atrophy (MSA), formerly known as Shy-Drager Syndrome, while rare, presents many different challenges, the first of which is finding a doctor who recognizes the symptoms. This can be…
Isn't it it ironic that the rarest things in the world can also be the most severe? Acromegaly, for example. When she was only 23, Jillian was diagnosed with a…
Como alguien que está luchando con una enfermedad crónica, es probable que no es ajeno a los problemas estomacales que vienen junto con el tratamiento o simplemente una realidad de…
Tomorrow is another day. New beginnings and new opportunities are right around the corner and bad days don't last forever. Keep your chin up!
Dear Exhausted Mom Living with Primary Immunodeficiency Disease (PI), I know how you feel. You are tired. Our worlds may feel and look similar, but I’m not living with primary…
I once heard that the difference between a good performance and a stellar one is transcendence—going beyond what’s written in the script or a song sheet. And, in my personal…
I am digging the Guthy-Jackson Charitable Foundation! When their teenage daughter was diagnosed with neuromyelitis optica (NMO), which is a rare, demyelinating, autoimmune disease that can be life-threatening, parents Victoria…
If you don't believe in the power of people who live with chronic diseases like PBC, you need to meet my friend and inspiring colleague, Linie Moore! In 1995, doctors…
This is always something good to keep in mind, but especially around the holidays! Spoonies often are dealing with fatigue and pain. Don't feel like you need to do so…
Years ago, there was a television show called Tales from the Crypt. From what I remember, a creepy-looking hand would open a creaky-sounding door and the viewer would "enter" the…
Few conditions are as widely misunderstood as Tourette Syndrome, and sadly, even fewer are so readily targeted for cheap laughs and rude humor. The reality of living with Tourette’s is…
When you have a rare disease like complex regional pain syndrome (CRPS), sometimes it seems like doctors don't know anything about it. What's worse, it seems like a lot of…
It's not an easy swim but moving forward is important. You could be so close to having luck be in your favor.
“In the pipeline” means something pretty special for people living with rare diseases that have no cure, such as neuromyelitis optica (NMO or Devic disease). Far from the divisive protests…
Arginase is an enzyme that helps break down nitrogen, a waste product of the body's protein metabolism. Nitrogen is converted into urea and then excreted from the body through urine.…
Está bien, todos ustedes, amantes del perro, escuchen! Love 'em todo el ya desea ducha de su propio perro, el perro de su vecino, un perro al azar en el…
Carcinoid syndrome occurs when a carcinoid tumor secretes certain chemicals into the blood stream. While rare, most of these tumors are contained in the gastrointestinal tract. Symptoms include, but aren't…
Alveolar capillary dysplasia, or ACD, is an extremely rare disease. In fact, there are less than 200 cases discussed in medical literature. It's caused by a genetic mutation in the…
Okay, I’m just baffled. Baffled. I’m trying to process my feelings as I’m writing this article because, well, that’s what women have to do sometimes. So, I just posted two…
Short bowel syndrome, or SBS, results from the surgical removal (or resection) of part of the bowel. Reasons for this type of surgery vary, and include congenital defects or injury to…
In today’s research world, the practice of teamwork has gained in popularity. This is especially true for researchers who work to better understand Neuromyelitis optica (NMO). NMO is an uncommon…
It is hard to study rare diseases because there are so few people with them. Patients are scattered all over the world. Many are children. Many cannot travel. How to make…
GSK and the National Institute of Allergy and Infectious Diseases have some good news released on Thanksgivng Day and its name is Nucala. Vasculitis is a tough and not fully…
OMG. It’s a Friday afternoon and as I’m sitting here, my heart is breaking for people with neuromyelitis optica, a very rare disease that use to be considered a rare…
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