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.
For those of us who suffer from depression, that mostly invisible mental illness that, at its worst, can render us incapable of getting out of bed and, at its best,…
For those of us who suffer from depression, that mostly invisible mental illness that, at its worst, can render us incapable of getting out of bed and, at its best,…
For those of us who suffer from depression, that mostly invisible mental illness that, at its worst, can render us incapable of getting out of bed and, at its best,…
Familial partial lipodystrophy (FPL) is a rare genetic disorder that causes fat cells to die off. This makes people with this disorder suffer from the progressive loss of body fat. At…
When is acromegaly like a scene from a movie? I know it's a stretch, but bear with me. I rarely go to the movies, you know, in a movie theater.…
"The Troubles" in Ireland/Northern Ireland go back to the 1700s, and they were aptly named. There's been a lot of fighting on both sides—those sides being the Irish and the English.…
In 1901, a German ophthalmologist named Karl Stargardt reported the first case of macular degeneration in a child. Today, we know this is very rare in children. Approximately one in…
There is a rare disease—and I do mean rare because less than 100 people in the world have been diagnosed with it—and it has an uncommonly long name. Get ready…
All Camden Fuller’s parents want is for him to have the chance to be healthy, grow up, and live a fulfilling life. That’s what every parent wants for their child.…
Have you ever tried to fit a square peg into a round hole? Short of taking a mallet to the peg, you’re not going to be successful in pushing it…
I first became aware of the bleeding disorder hemophilia when I was in high school reading about Nicholas II, the last Russian tsar. His son had severe hemophilia B, which…
The spinal cord is a major part of the central nervous system, and when it becomes inflamed, transverse myelitis results. It often causes a band-like sensation across the trunk of…
Spinal muscular atrophy (SMA) occurs when the immune system attacks motor neurons, resulting in the muscles surrounding the spinal cord atrophying (degenerating). SMA is an inherited disorder that disables the…
On a beautiful summer day, a baby girl named Remi made her debut in the world. To all appearances, everything was normal—10 fingers, 10 toes, and bright eyes. Her parents…
If you were to rate the severity of different types of epilepsy from one to 10, 10 being the most severe, Dravet syndrome would be an 11. Dravet is catastrophic…
I’ll admit that I ran wild as a kid. I never got into trouble—you know what I mean, I was never arrested, no animals were harmed, and no injuries were…
Here's the rundown on sickle cell anemia. It causes a person to have abnormal hemoglobin (sickle hemoglobin) in their red blood cells. In order to understand what I'm talking about,…
I recently wrote about an 11-year-old Canadian girl who has an extremely rare disease called rapid-onset obesity with hypoventilation, hypothalmic dysfunction and autonomic dysregulation, or ROHHAD. There are roughly 100…
Until recently, the term ROHHAD meant nothing to me. But, then, I heard about an 11-year-old Canadian child named Denika Bailey who has this rare disorder. The letters stand for:…
Imagine sitting down at the table. You put a normal amount of food on your plate and you begin to eat. Then, you take a second helping of everything and…
People with Addison's disease often appear just fine on the outside, but on the inside, it's another story. Why? Just above the kidneys are two hormone-producing glands called the adrenal…
Chudley-Rozdilsky-Houston Syndrome (named for the researchers who have studied the syndrome) is thought to be an autosomal recessive trait that causes multiple diseases, including developmental delays. Among the maladies of…
Short bowel syndrome, which is also called short gut, occurs as a result of someone having at least half of their small intestine removed, and sometimes the removal of a portion of…
When you have an immunodeficiency disease, you’re very much at risk of getting an opportunistic infection because your immune system isn’t “scanning” your body’s cells to kill off abnormal or…
Bronchopulmonary dysplasia, or BPD, is a chronic lung disease that most commonly occurs in premature infants and is caused by a reaction to being on mechanical ventilation, or from being on…
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