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.
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…
I think most people experience eye problems at one point or another. Maybe your child came home with "pink eye," and before long, everyone in the household had itchy, burning…
Spinal muscular atrophy (SMA) is caused by the loss of motor neurons in the spinal cord and the brainstem. It leads to weakness and muscle wasting that affects a baby's ability…
Behcet's disease falls under the umbrella of autoimmune diseases and disorders. It affects approximately 400 of 100,000 people in Turkey, and is also commonly found in the Middle East. It…
Did you ever get that weird feeling when you've arrived at the party, but almost all the guests have already departed? Yes, you are definitely late, late, late. That's how I feel…
Have you ever heard of the children’s book, Harold and the Purple Crayon? It’s about a little boy who draws the things he wants to see with his purple crayon,…
If you have pulmonary arterial hypertension (PAH), you know it's a rare form of high blood pressure. It affects the arteries that run from the heart through the lungs, causing those…
If you had the opportunity to make a wish, what would it be? Would it change if your child had Lennox-Gastaut? I can think of a few wishes I'd make,…
What is carcinoid syndrome? This syndrome is caused by tumors that grow in the mucosa of the gastrointestinal tract. It occurs in people who have carcinoid tumors, although not all go…
You’ve heard the expression, “What’s in a name?” How about, “What’s in a number?” September 7 is World Duchenne Awareness Day. It occurs on that day every year because the 7th…
Glanzmann's thrombasthenia (GT) is an inherited autosomal disorder that begins at birth. It causes prolonged or spontaneous bleeding and affects one out of one million people. Patients tend to bruise easily and…
Let's talk about Mount Everest. It sits on the border between Nepal and China and its peak is 29,029 feet above sea level--which makes it the highest mountain on earth.…
Guillain-Barre syndrome, or GBS, occurs when the body's immune system attacks the nerves. People will usually notice tingling and weakness in their arms and legs. As annoying as that can feel,…
Ovarian cancer is the most deadly form of reproductive organ cancers. Why? Because it's usually not diagnosed until it has reached the late stages because the symptoms are often overlooked,…
Cystinosis breaks my heart. Why, you may ask? Because it robs children of their childhood. I'll explain in a moment--but first, let me give you a general overview of the disease.…
Here in the United States, we tend to put doctors on a pedestal. So much so, many of us experience a rise in blood pressure in the office. There’s even a…
Guillain-Barre syndrome (GBS) occurs when the body's immune system attacks the peripheral nerves, damaging the myelin insulation. Muscle weakness in the arms and legs are often the first signs of…
Cerebral palsy (CP) is caused by brain lesions that are non-progressive, meaning the lesions don't cause the brain to further deteriorate. It causes impairment of motor function—the ability to control motion…
I recently read an article that was focused on amyotrophic lateral sclerosis (ALS) and how cases of this degenerative motor-neuron disease are expected to increase as the world population ages.…
Most of us know that not having enough iron in the blood results in disorders like anemia, fatigue, low energy… I first became aware of “iron-poor blood,” or anemia, when…
Any parent watching their child have an epileptic seizure can tell you that even the shortest seizure seems to last forever. In the case of a seizure that goes on for…
More than 35,000 Americans suffer from Huntington's disease (HD), a neurodegenerative disease. Eventually, HD destroys a person's ability to walk, talk, swallow, or have meaningful relationships with friends and family. Chorea is…
There are four million people in the United States walking around with Sjogren’s disease, and nine out of 10 of them are women. This autoimmune disease affects the entire body…
The pituitary gland is a pea-sized gland that acts as the body’s “master control” and governs the functioning of almost all of the other endocrine organs in the body. These are…
Juvenile idiopathic arthritis (JIA) is the most common form of arthritis in children. It occurs when the body's autoimmune system attacks healthy tissue and causes inflammation of the joints. What triggers…
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
