The first paragraph of the myasthenia gravis (MG) “Fact Sheet,” created by the United State’s National Institute of Health (NIH) National Institute of Neurological Disorders and Stroke (NINDS) and posted…
La enfermedad crónica puede ser difícil de explicar a su hijo. La rareza y la persistencia de la condición, así como las limitaciones que se les imponen, pueden ser difíciles…
You all remember the ALS Ice Bucket Challenge don't you? Well, according to the NY Daily News, researchers at The University of Massachusetts Medical School have discovered the gene that is responsible for…
There are only a handful of people in the entire world with Char Syndrome. Char Syndrome happens when a person is born with mutations in the TFAP2B gene, which hinders the…
Jules Perez-Montiforte was described by her family and friends as the center of the party. Just walking into a room, she would illuminate everyone with a smile. But even though IPF…
Being compassionate and willing to lend a hand can make someone else's day but also impact your own. Even in illness, when many tasks aren't plausible, there is often a…
If this makes sense to you, “Hey, look! Some dude on a sponge has wiped out and is going over the falls on a hollow little right!” then you need…
Okay, the Brexit-bound UK is going through a turbulent time, and Scotland gets a special difficulty award for being currently Brexit-bound against the majority of its people’s will. Face it, 2016…
Autumn is going to be a fun time for people interested in supporting essential research for amyloidosis. Amyloidosis is a group of about 15 rare, progressive, and incurable diseases of…
Eisenmenger Syndrome is a condition that occurs in some people who were born with heart defects. Sometimes those defects will cause a hole in the heart to be formed which causes…
For a disease affecting so few people, amyotrophic lateral sclerosis (or ALS) has a somewhat higher than normal profile. That’s due in small part to the ubiquitous “Ice Bucket Challenge”…
Don't you hate when you remember a question you wanted to ask after you've already left? Arguably the most important questions are towards the end of appointments, when you're receiving…
When people are diagnosed with amyotrophic lateral sclerosis (ALS), it’s overwhelming for both patients and their loved ones because it does not discriminate and can strike at any time. This…
Some illnesses elude even the most educated and experienced medical professionals. Yet, no matter how rare their disease, people need to be diagnosed quickly for an accurate treatment plan to be initiated.…
Tu salud es importante, muy importante, por lo cual, naturalmente, usted quiere tomar las mejores decisiones para su cuerpo. Sin embargo, a veces, que se vuelve delicado, especialmente…
Nicole Tardiff-Brooks just wants to be a mom to Colin, her sweet 4-year-old son. But Nicole has several diseases--lupus, Sjogren's disease, and severe neurological and liver damage. Colin knows Mommy is sick,…
That should be easy right? Unfortunately for some, like those with IPF, it is not that simple. Their lungs produce scar tissue that prevents the body from getting the oxygen…
Chiasma is conducting another clinical trial for Acromegaly patients, the MPOWERED study. “It is designed to compare the safety and effectiveness of an investigational new drug product, octreotide capsules, to…
Take things one day at a time. Know that the going isn't always easy and the path isn't always smooth. Your journey with your health is exactly that, a journey,…
I love my mom. She's on Facebook, obviously. Since I got sick, she's always sharing the latest Lyme news (obviously). She's the best and incredibly supportive of a disease that some…
Whether you’ve just been diagnosed with IPF, or you’ve been living with the diagnosis for a while now, there’s one website location that you should get to know: The Pulmonary…
1. Las enfermedades raras tienden a venir con nombres largos y difíciles. Para las muchas personas que no están familiarizados con ellos, pueden ser un bocado y puede que tenga…
Welcome to this week's Editor's Choice! Dysautonomia is misunderstood and neglected. This week we have two posts that could help you deal with this condition. We also have a heartwarming…
Just bringing some awareness to a disease you may not have heard of, especially since it only effects 1 in 2 million people. It's called Acquired Hypoprothrombinemia. This happens when the…
Pop quiz! What’s the difference between PF and IPF? (Other than an ‘I’?) Answer: Basically, nothing. PF, or pulmonary fibrosis, is a condition that causes scarring of the lungs and…
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