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.
A few years ago, a friend of mine who is a violinist suddenly developed a movement disorder called focal dystonia. His neck began to have intermittent muscle contractions. His head would…
Get Ready… The NYC Dystonia Patient Symposium is Coming Up Next Week!
An amyloid is an abnormal protein produced by a person's bone marrow. It builds up in the body's organs and, while rare, is very serious. The disease is called amyloidosis,…
Amyloidosis is Nothing to Fool Around With… Get It Treated!
Hereditary angioedema (HAE) has long been misunderstood. Many patients go for years without a proper diagnosis because the medical community knows very little about this rare condition. Part of my job…
Hereditary Angioedema… What? You’ve Never Heard of It? Read This!
I was at a gala hosted by my local library about two weeks ago. It was a posh affair, as library galas go, and everyone was all dressed up. The…
Narcolepsy Nearly Derailed My Party-Patter Conversation
When I was in college, I went to the home of my biology lab partner to work on a project. While we were sitting at the kitchen table, I got…
Pediatric Ulcerative Colitis: Can Ingesting Parasites Help?
Primary immunodeficiency diseases (PI) weaken the body's immune system, leaving patients prone to infections. In very mild cases, the person may not even know they have PI, but in other…
Got PI? There’s a National Conference for You!
San Diego is rumored to have one of the nicest climates in the United States. From what I've heard, it's a balmy 72 degrees almost year-round, and the sky is…
Here’s Why Support Groups are So Important in the Narcolepsy Community
Duchenne muscular dystrophy (DMD) affects approximately 15,000 to 20,000 young boys in the US, but for the Richard and Jamie Romito family, those numbers mean nothing. All three of their sons…
Duchenne Muscular Dystrophy Motivated These Parents to Start the Romito Foundation
Diamond Blackfan anemia (DBA) sounds like the villainous star of an action movie, but it's not. It's an extremely rare blood disorder wherein the bone marrow doesn't make enough red…
This Video Will Melt Your Heart and Raise Money for Diamond Blackfan Anemia Research
Common variable immune deficiency is just one of a cluster of disorders under the primary immunodeficiency diseases (PID) umbrella. People with this rare condition are often repeatedly misdiagnosed because there is a…
Get Ready for World PID Week – April 22 – 29, 2017!
I donate blood whenever I can. Is it a fun-time activity? Nope. Let's face it: Nobody likes to get stuck with a needle. So why do I bother? I donate because other…
Buddy, Can You Spare a Pint (of Blood) for Aplastic Anemia?
Did you know that the #1 genetic cause of death for infants is spinal muscular atrophy (SMA)? It quickly robs the infant of physical strength, rendering the child unable to…
Patients with Spinal Muscular Atrophy Celebrate First FDA-Approved Treatment
The way the Japanese government handled Hansen's disease patients during the 20th century wasn't very humane. They were sent to live in sanatoriums, separated from their families, and shunned by…
Can This Wrong be Righted for a Long Ago Hansen’s Patient?
When Louis Mendiola was a young man, he served our country as a soldier in Vietnam. Years later, Mendiola, now 62 years old, had another fight on his hands: He…
Amyloidosis Couldn’t Stare Down This Former Soldier
The word adrenoleukodystrophy doesn't exactly roll off the tongue, does it? Adrenoleukodystrophy (ALD) is an exceptionally rare genetic disease that affects one in 18,000 males. If you're one of those 18,000 people,…
Help Us Raise Awareness About Adrenoleukodystrophy, or ALD!
A few days ago on April 10, 2017, a terrible tragedy took place in San Bernadino, California. An angry gunman entered a special education classroom in North Park Elementary School and…
Boy with Williams Syndrome is Among the San Bernadino School Shooting Victims
Liver disease has many causes and last month, March was Liver Disease Awareness month in Canada. Yes, Canada. That country with the handsomest Prime Minister... ever. (*Sigh*) But I digress. In…
NASH: Get to Know Your Liver, and the Diseases that Can Affect It
Duchenne muscular dystrophy (DMD) is a particularly cruel genetic disease. It most commonly affects boys, who by the age of three, begin to experience muscle weakness in the legs, hips…
Drug for Duchenne Muscular Dystrophy Sails Through FDA Approval, Questioned by Shareholders
There's a very funny scene in an old Monty Python movie that shows a body collector calling, "Bring out your dead... Bring out your dead." He heaves another body onto…
Hansen’s Disease: Let’s Hope History Won’t Repeat Itself
Sickle cell anemia is caused by abnormal hemoglobin, which is the protein that allows oxygen to stick to red blood cells (RBC) and travel throughout the body. This causes bone…
7 Sickle Cell Anemia Symptoms You Should Know
Clinical immunology is a biomedical branch of science that studies the immune systems of all living things, including people. It is through such studies that great advances in medicine have…
You Need to Tell Your Immunologist About These Conferences!
My dad is devoted to the people he loves. I can’t tell you how many times I’ve heard, “You should always honor your family.” I’m probably not as generous a…
Can I Be Frank About Why You Should Love Frank?
Here, in the United States, just thinking about April 15th is enough to give you the heebie-jeebies. Of course, I'm talking about the deadline for filing our federal income taxes.…
Do These Rare Disease Tax Breaks Apply To You?
Approximately one million people worldwide have been diagnosed with tuberous sclerosis complex (TSC), a condition where non-cancerous tumors and other lesions grow most commonly in the kidneys, heart, lungs, skin and…
This Doctor with Tuberous Sclerosis is Also a Patient in Need of a Kidney
Have you ever felt woozy when you stood up? And maybe it was so bad you actually fainted. One possibility is you have a form of dysautonomia called postural orthostatic…
Get Ready for the 5th Annual Dysautonomia International Conference!