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.
If you have sarcoidosis, you already know that it's a disease that causes inflammation that in some cases, doesn't go away. The body's immune cells clump together and form granulomas.…
Fabry disease results from deficient activity of alpha-galactosidase A (a-GAL A). Bless you. What? That's an enzyme which breaks down complex sugar-lipid molecules called glycolipids. When the body can't break…
Optic neuromyelitis, also known as Devic's disease, is a rare disorder that affects the eyes and spinal cord. It occurs in approximately one in five out of 100,000 people, and…
Bronchopulmonary dysplasia (BPD) is a condition that mainly affects premature infants who have very low birth-weight (under 2.2 pounds). Because the baby's lung tissue is underdeveloped, respiratory distress can result,…
Idiopathic thrombocytopenic purpura (ITP) is a rare immune disorder that can cause bleeding (from an insufficient platelet count) or bruising because the body is destroying the patient's blood platelets. Normally,…
Pompe disease is one of those rare disorders that progresses steadily over the course of a person's life. Patients are lacking the enzyme that breaks down glycogen, and the build-up of…
Pompe disease an inherited neuromuscular disorder that is caused by certain gene mutations, particularly in the gene that makes acid alpha-glucosidase (GAA). In Pompe's most severe form, it's often fatal because…
A cure may be just around the corner for people who have hemophilia B. And anytime the word "cure" appears in a sentence with a disease state, there's cause for…
Finding the money to fund research and the development of treatment (and maybe even a cure) for most rare diseases is difficult for a couple reasons. Rare diseases are notoriously hard…
In a nutshell... Amyloidosis is a rare blood disorder that occurs when a person's bone marrow makes too much of a protein called "amyloid," which then collects in the body's…
Von Willibrand Disease (VWD) is a bleeding disorder, not unlike hemophilia A and hemophilia B. But don't be fooled. It's very different. It's also the most common bleeding disorder on…
If you have a rare disease, you probably have days when you think: "I wish I had someone to talk to or email back-and-forth with... someone who understands exactly how I…
Sometimes life can throw a mean curveball and try as you might, you just can't dodge it. Ankylosing spondylitis is one of those curveballs. For some people, it can lie…
Fifty years ago, a baby born at 22 weeks didn't have a very significant chance for survival. It wasn't until the early 1970s that specialized equipment was developed to take…
If 70 million people are suffering from dysautonomia, why is the medical community so clueless when it comes to diagnosing this disorder? Dysautonomia occurs when the autonomic immune nervous system--…
Having a rare disease like Addison’s is enough of a challenge for most people. Addison’s disease is a disorder of the adrenal glands which causes extreme fatigue. Now, imagine having…
Chris Ormerod, 55, is a former goalkeeper for the Padiham Football Club (which, if you live in the United States is the game we call "soccer"). He suffers from Churg-Strauss syndrome, a…
Melissa Nearman was a student with big plans and a great work ethic, with her feet firmly planted on the path to achieving her dreams. After many appointments and tests, doctors…
The Northampton Chronicle reports a two-year fundraising effort by the Herbert family in Northampton, UK, has reached fruition, and they are now able to provide their son, Lewis, who is…
So who doesn't love Doctor Who? It seems like no one in the world wants to keep that doctor away, but only a select few enter the ranks of "Doctor Who superfan." Of…
Eosinophilic granulomatosis with polyangiitis (EGPA), also known as Churg-Strauss syndrome, causes inflammation of the blood vessels. It affects approximately one in 500,000 people in the United States. There's no cure, but symptoms…
Amanda and Chris Bernier, and their toddler Arabella, are in many ways, a rare family. Mom Amanda and dad Chris are both Wisconsin volunteer firefighters. Or at least Amanda was,…
When Angela Clarke was just hitting the teenage years, she craved the attention wearing high heels would bring her--plus, being short in stature, she saw them as a quick fix to…
People with ankylosing spondylitis (AS) already have a lot on their plates trying to cope with the symptoms of this inflammatory disorder that mainly affects the spine. In severe cases, vertebrae…
On the day Remi Savioz was born, it seemed that the world had welcomed a perfectly normal healthy baby girl. On day three, that illusion was shattered when she began…
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