First of all, what the heck is cataplexy? You may ask if you are unfamiliar the term. Cataplexy is what happens when a person suddenly loses all voluntary muscle control, and…
¿Y ahora qué? Llegaste al doctor para hacerte un chequeo y sales con un diagnostico que cambia tu vida entera. Sea, Distonía, Acromegalia, Angioedema Hereditario (AEH) o la enfermedad de…
A consistent struggle shared by those living with chronic conditions is to what extent that condition defines their lives. It's an ongoing battle and the results are constantly fluctuating. At…
Cheryl Jackson lived most of her life not knowing why she was chronically ill. She had recurring sinus infections, bronchitis, and pneumonia. In her 40s she experienced GI issues that forced her…
I have a love-hate relationship with big cities. Every time I visit NYC, for instance, I feel kind of claustrophobic. I hate that you can’t see large expanses of sky…
if you give it your all, no one will be able to say that you didn't try hard enough. That applies across many possible situations but for rare disease patients,…
focus on the good and the good will be highlighted more often than not.
You may have heard the buzz words "gene therapy" without really understanding what it is, or what's at stake. Gene therapy is when a healthy copy of a gene replaces…
Allowing yourself to be hopeful, allowing yourself the opportunity to shape your future through the lens of hope, will make your rare disease fight that much easier. Fighting a rare…
As my colleague James Earnest Cassady covered earlier this week, Wake Up Narcolepsy, or WUN, has been raising funds for narcolepsy research in a pretty spectacular way: They have a team…
April is right around the corner, and for those living with or caring for someone diagnosed with Sarcoidosis, you know very well that it's going to be National Sarcoidosis Awareness Month.…
never lose hope, for hope is an infinite feeling and disappointment is never everlasting.
Chronic Lyme is as the name indicates...chronic. But it definitely was at it's worst during tough antibiotic treatment. I was recently talking to my girlfriend who is currently going through…
Messages of hope relate to people in different ways. One may see it as an exact description of their life at the very moment they come across it, others may…
Ever feel like you have 1,097,652,876,821 things to acknowledge and take care of and literally none of those things are something you actually want to do? Well let's take a huge…
Rare Conect explica la vida de Annie Kwakkel que nació con cistinosis,una enfermedad genética que afecta aproxima a 1 en 100,00 a 200,000 recién nacidos en todo el mundo. Hoy…
Two university professors in Japan are working to make a difference in the lives of people who suffer from narcolepsy and cataplexy associated with narcolepsy. Dr. Hiroshi Nagase and his…
To the casual observer, one-year-old Thor Uran is a happy, healthy toddler with a winning smile and a shock of blond hair fitting for his super-heroic namesake. But Thor’s parents…
Sometimes, when it comes to dealing with pressures out attitude toward others will inevitably fluctuate. This doesn't mean we mean to do it, it's just a reflection of our current…
Gaucher disease has come a long way, but that doesn't meant it's easy to understand when you're first diagnosed. Luckily, these facts can get you started: Fact One: Gaucher disease affects…
Back in the 1975, the movie Jaws came out right before the summer season began. The movie posters showed the gaping open mouth of a Great White shark with a…
Happy Tuesday, Caregivers! I say this in all sincerity because as caregivers—it’s easy to find yourself actually dreading the weekends, right? You know what I’m talking about. You know that…
As with other PW memes, this meme is aimed at getting you motivated, getting you pumped to find the silver lining in the earth shattering, life altering shit-storm that is…
Anyone who’s lived with narcolepsy knows how tough it can be to find other people who can relate to what they’re going through. The folks at the Narcolepsy Network know…
CysticLife.org, una red en línea para la comunidad de la fibrosis quística (FQ), se está embarcando en un esfuerzo de recaudación de fondos para apoyar la investigación histórica impulsado por…
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