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.
Huntington's disease (HD) is one of those rare diseases that prior to diagnosis feels like a coin toss. Will you get it? Will it pass you by? It's a genetic…
Diamond-Blackfan anemia (DBA) is a bone marrow failure disorder that is inherited, but very rare. It was named after Dr. Louis K. Diamond and Dr. Kenneth D. Blackfan, who were the…
Approximately one in 5,000 babies are born with a birth defect called gastroschisis. When a baby's intestines are protruding through a hole in the stomach wall resulting in the intestines being…
Let's talk blood donation. I recently spoke with a man from a small African country who suffers from hemophilia. He told me that when he was growing up, there was no…
To walk in the shoes of others is sometimes what it takes to truly understand their journey. So when I came across the blog, Jason and Justin's Journey x2 - Don't Stop…
Devic's disease, also known as neuromyelitis optica (NMO), affects the spinal cord and the optic nerves. It is a relapsing-remitting disease, meaning its symptoms can appear and disappear. In NMO,…
Ladies and gentlemen, it's that time of year again, when I put on my superhero cape, I ascend to the top of the highest mountain, and at the top of…
April 17, 2017 is World Hemophilia Day. This is significant not only for people with hemophilia, but also for those with other bleeding disorders like von Willebrand disease (vWD). If…
Our kidneys do a lot of work keeping the body healthy. They filter fluids, electrolytes, toxins, and waste the body can't use. Inside the kidneys are blood vessels that help…
Lately, I've been learning a lot about mucopolysaccharidoses (MPS). MPS covers a lot of territory. It refers to when the body is missing a particular enzyme--it doesn't matter which one:…
In 1932, a Dutch physician named Johannes C. Pompe noticed significant muscle weakness in an infant he was treating. In the years that followed, scientists would not only name the…
Most parents have had their child fall asleep in an unusual place (think on the potty) at least once. But when it happens frequently, (during mealtimes, in the middle of…
When the human brain experiences a sudden disruption of blood flow, a type of paralysis called "hemiplegia" can result. Paralysis can occur on either the right or left side of…
In these times of political uncertainty, when budgets are being slashed, and medical programs are being defunded without regard to the people who will ultimately suffer, I certainly hope that…
Gorlin-Chaudhry-Moss, or GCM, is an inherited disorder that falls under the umbrella of craniofacial syndromes. While the fetus is in utero, premature closure between bones in the skull occurs, and that…
On January 8, 2017, a man with one of the most brilliant minds of our age celebrated his 75th birthday. This, by itself, wouldn't be particularly remarkable, however the celebrant…
Hereditary angioedema (HAE) causes unexpected swelling in the hands, feet, abdomen, and face. HAE can be fatal when the patient has a laryngeal attack, where swelling in the throat makes it impossible…
Carcinoid tumors usually develop in the gastrointestinal tract or the lungs. Because they are very slow-growing, patients may remain symptom-free for a long period of time. While this is good,…
In the rare disease world, getting a correct diagnosis can be akin to playing the lottery. Symptoms often mimic other conditions, and many healthcare professionals have never seen a patient…
Does the name Ludwig van Beethoven ring a bell? It should. He was one of the greatest composers the world has ever seen. He also suffered from cirrhosis of the liver, infectious…
With all the political hocus-pocus that's enveloped the United States over the past year, I'm starting to get "petition burn-out," "marcher's burn-out," and just a general "call-to-action burn-out." This is…
A story I read about a man with ankylosing spondylitis (AS) brought back a great memory for me. A few years ago, I was spending a lonely New Year's Eve…
Alveolar capillary dysplasia, or ACD, is an exceptionally rare disease that seldom has a positive outcome. It begins in the womb when the alveoli capillaries in baby's lungs don't properly…
I just had my yearly physical and something weird (for me) popped up in the blood tests. My cholesterol level was up. Not through the roof, but enough to raise…
Primary sclerosing cholangitis, or PSC, is a chronic progressive disease that damages the bile ducts. And, if you didn't know, bile is a liquid that assists the body in the…
© Copyright Patient Worthy
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.
