Erica Zahn is passionate about raising awareness of rare diseases and disorders and helping people connect with the resources that may ease their journey. Erica has been a caregiver, and is a patient, herself, so she completely relates to the rare disease community--on a deeply personal level.
Mika Covington was diagnosed with cystinosis when she was 10 months old, and has struggled with its effects throughout her life. Cystinosis is usually diagnosed before the patient's second birthday. It's…
One of the many problems with having a rare disease is that very few people know anything about what you, or your loved one, go through on a day-to-day basis.…
As a writer, every once in a while, I'll have an "A-HA!" moment: Usually when I realize my perception about something is off kilter, and the truth suddenly becomes apparent.…
Ankylosing Spondylitis (AS) is a form of inflammatory arthritis that most commonly affects the spine and is thought to have its roots in genetics. As symptoms worsen, the inflammation can travel…
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…
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…
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…
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…
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…
Thanks to narcolepsy, Brianne had an unusual childhood. She began having the symptoms of narcolepsy around the age of seven. As a young girl, Brianne would sleepwalk into the kitchen…
Recently, a website called The Mighty invited its readers to write a letter to the rare disease or mental disorder that affected them or a member of their family. One mother…
When talking about genetic diseases, rare and otherwise, it helps to know a little bit about genetics. Every person's body has thousands of genes that are responsible for generating proteins…
In a segment on Oprah, dystonia patient Rogers Hartmann agreed to wear a camera on her head to show how she experiences the world. Bent at nearly a 90% angle, she frequently…
Von Willebrand disease, or VWD, affects about 1% of the American population, but until recently, there was no dedicated therapy to treat it. If you're unfamiliar with this rare disease, VWD…
When Julie Flygare was diagnosed with narcolepsy eight years ago, she had no idea what would transpire in her life as a result. She realized that very few people understood…
Have you ever heard of "syncope?" First of all, it's pronounced SING-co-pee, and you're not alone if the term is new to you. Syncope is thought to be responsible for a…
Huntington's disease is a heartbreaking condition that causes brain neurons to deteriorate. People with Huntington's lose motor control, have involuntary motions (chorea), and decline mentally. At this time, there is…
Adrenal insufficiency, where the adrenal gland does not produce enough of certain hormones, like cortisol, is the cause of a very rare condition called Addison's disease. And Lita Newdick knows…
If you're curious about narcolepsy from a first-person perspective, there's an awesome YouTube channel you should subscribe to. Sleepy Sarah Elizabeth is creating a video journal detailing her struggles with…
Why does time always have to run so short? Anyone who has ever experienced kidney dialysis knows the grueling process--the waiting game you play until a kidney becomes available for…
Dee Daud suffers from an extremely severe case of narcolepsy. Even walking his dog, which he tries to do three times a day, can turn into an emergency. He will…
Amanda Vasas has a special reason for wanting to elevate awareness about narcolepsy, a chronic sleep disorder she was diagnosed with at the age of 16. She doesn't want anyone else to…
At 103 years old, you might expect your hands to shake a little, or maybe a lot. But what if you had an eagle-eyed medical student helping you with your meal? Suddenly,…
All of us have been there: you're at work and an important deadline is coming up--your boss is breathing down your neck, and your co-workers are micro-managing the project. It's…
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