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.
[Source: By Bobjgalindo (Own work) [GFDL (http://www.gnu.org/copyleft/fdl.html) or CC BY-SA 4.0-3.0-2.5-2.0-1.0 (http://creativecommons.org/licenses/by-sa/4.0-3.0-2.5-2.0-1.0)], via Wikimedia Commons]
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…
Continue ReadingPrimary Sclerosing Cholangitis Can Do a Number on Your Liver
What if you were born with an enzyme efficiency that prevented your body from breaking down lipids? Then you are probably one in 50,000 people who has Gaucher disease. And…
Continue ReadingGaucher Disease: 21st Century People Share Their Experiences
Myasthenia gravis is a chronic neurological autoimmune disorder that causes weakening of the voluntary muscles in the body. The most frequently affected muscles control eyelid movement, swallowing, and facial expression. In the…
Continue ReadingWhen MG Strikes… Learn More at the March Conference!
In 1818, a novel was anonymously published in London by an 18-year-old author. It told the story of a scientist who was determined to bring a cadaver back to life…
Continue ReadingTwo Centuries of Research Pays off for Eisenmenger Syndrome Patient
Panuveitis refers to generalized inflammation of the uveal tract, the retina, and vitreous humor; in other words, all parts of the eye. Most cases have no known cause, but some…
Continue ReadingDon’t Ignore Your Eye Pain — It Could be Panuveitis
It's time to lift a very rare condition called Non-24 Sleep-Wake Disorder, or Non-24, from the shadows so that those who are living with it can be better understood. For…
Continue ReadingMidnight in the Garden of Non-24 Sleep-Wake Disorder: How Much Do You Know?
If you, or a member of your family, is affected by a congenital disorder of glycosylation, or CDG, you are most likely familiar with the terms, definitions, and physical impact…
Continue ReadingWhat Can 12 Million Dollars Buy? Maybe a New Treatment for CDG-la
Lambert-Eaton myasthenic syndrome (LEMS) is an autoimmune disorder that affects the patient's pelvic and thigh muscles, gradually weakening them. It's closely tied with small cell lung cancer because it affects…
Continue ReadingBiopharma Company Catalyst Closes in on a Treatment for LEMS
I met a woman at a patient conference last year who confided she had just been diagnosed with narcolepsy. She said because she knew next to nothing about the disorder, she…
Continue ReadingYou Should Read This Woman’s Narcolepsy Confessions
Postural orthostatic tachycardia syndrome does not exactly roll off the tongue, so most people refer to it as POTS. It's characterized by a sudden change of blood pressure that happens…
Continue ReadingRockers Stirred Up the POTS Benefit for South Carolina Teen
Wilson disease is one of those conditions that creeps up on the patient. The disease causes the body to be unable to properly metabolize copper, which as a result, builds…
Continue ReadingWilson Disease: Excess Copper Can Wreak Havoc on the Human Body
Central precocious puberty used to be much rarer than it is today. Doctors are seeing more and more patients who begin to develop too early, and they can't figure out…
A urea cycle disorder occurs when the body can't break down the ammonia that amino acids produce. Unchecked, ammonia is toxic. According to the National Urea Cycle Disorders Foundation, there…
Continue ReadingScreen Your Baby for Urea Cycle Disorders, Get a Jump Start on Good Health
I saw a quote, recently, that resonated with me. It said: "I fight for my health every day, in ways most people don't understand. I'm not lazy. I'M A WARRIOR." Dealing…
Continue ReadingWhy Can’t I Take a Day Off from Cystinosis? Ummm, Maybe You Can…
If you suffer from complex regional pain syndrome, or CRPS, you know the value of effective pain management--because without it, life kind of grinds to a halt. Unfortunately, many of…
Continue ReadingOpioid Addiction Treatment Succeeds with Post-Treatment Support
Mast cells are produced by bone marrow and are part of all tissues in the body. They are regulators of the immune system that contain storage sacs that contain active…
When a fetus inherits a mutated copy of the TFAP2B gene, the development of the heart, face and arms and legs is affected. As a result, when the infant is…
Continue ReadingAmong the Rarest of the Rare Diseases: Char Syndrome
Your health could seriously be jacked if you have the JAK2 gene. Why? You're likely affected by primary myelofibrosis, a genetic mishap that causes scarring in the bone marrow. Of…
Continue ReadingPrimary Myelofibrosis: When Your JAK2 Gene Hijacks Your Health
Anyone born before 1955 probably remembers exactly where they were when President John F. Kennedy (JFK) was shot. I've heard people reminisce about that moment right down to what they…
You're sitting across the desk from your doctor having just been told you have myasthenia gravis, or MG. Suddenly she starts dropping words like "diplopia" and "acetylcholine." She looks expectantly at…
Continue ReadingMG: If You Don’t Understand the Explanation, Ask Questions!
Parkinson's disease is a progressive neurodegenerative disorder that slowly takes away a person's ability to perform even the simplest tasks. It is caused by the brain's inability to continue to…
Continue ReadingKudos to Researchers Who’ve Isolated a Biomarker for Parkinson’s Disease
A 10-year-old boy in Colorado will be ringing in the new year with a new kidney, and his parents couldn't be more relieved. Marcus Root suffers from cystinosis, a rare…
A little more than a year ago, a little girl in Michigan was critically ill. Doctors were hopeful they could help her, but there were no guarantees. Lilly Vanden Bosch,…
Continue ReadingEverything’s Coming Up Roses for Lilly, She Beat Aplastic Anemia
'Tis the season to help those in need. Complex regional pain syndrome, or CRPS, can be so severe, it drives some people to desperate ends. It usually starts with an…
Continue ReadingThis Band Wants You to Help Spread the Word About CRPS
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
Sign Up For Our Patient Panel
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.
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.
