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.
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…
Lexi New’s Bassett Hound mix Izzy is truly unique, and Lexi credits divine intervention for their meeting. She feels, spiritually, that God wants to help her live life to the fullest. Lexi,…
In 1924, a maverick young doctor at the Mayo Clinic named Russell Wilder came up with a diet that he thought would help people with epilepsy reduce the number of…
Sixteen-year-old Sydney Rohmann has a number of rare conditions that have left her in a wheelchair. Among them are Ehlers-Danlos syndrome (EDS) and postural orthostatic tachycardia syndrome (POTS). She has even had brain…
In every great mystery novel, there's a code that needs to be cracked so the protagonist can triumph in the end. When it comes to medicine, that code is the…
In order to learn about something new, I need to know what the words describing the illness mean. If you look at the word "dysautonomia," and have never run across…
On June 23, 201, a little boy named Jackson was born. He weighed in at a healthy seven pounds, three ounces, and was 20.5 inches long, and his parents were…
MPS Awareness Day has come and gone, but that won't stop us from spreading information! In honor of MPS Awareness Day (which took place on May 15th), we'd like to do…
Eisenmenger syndrome is a ventricular septum defect, which is a complication of a congenital heart defect, including atrial septal defects, ventricular septal defects, patent ductus arteriosus, and more complex types of acyanotic heart disease.…
Ehlers-Danlos Syndrome is a complex genetic disorder that is caused by defects in the body's structural proteins, also known as collagen. Hypermobility of the joints is one of the most…
In the past, a diagnosis of Huntington's disease offered the patient absolutely no hope. It was understood that a downward trajectory was the only way the disease would play out,…
What if you had a super-rare disease and thought you were the only one on the planet who had it? What if your medical team suspected you might be right about…
When UK cyclist Andrew Beale decided he was going to throw his support behind The Dystonia Society, he didn't waste time getting sponsors. With nearly $400 pledged, he was disappointed to learn that…
Just how far does the apple fall from the tree? One in 12 people in the Western hemisphere suffer from autoimmune diseases such as juvenile idiopathic arthritis and Crohn's disease. A…
Joel is like a lot of people. For two years, he suffered from back pain that was resistant to treatment. He had physical therapy, medications, and was placed in traction--to…
A recent study at the University of Edinburgh in Scotland is showing results that link genetics to certain forms of mental illness. Briefly mentioned was the fact that, although the…
Endocrinologists are continuing to debate the possible link between acromegaly and cancer, but have not made an absolute connection--if anything, researchers have noted great inconsistencies in their findings. While that…
I was reading an article in Rolling Stone magazine about a young internet celebrity, and buried at the end of the overblown descriptions of the young man's activities on Vine…
A new study by pediatric researchers at Harvard Medical School and Boston Children’s Hospital shows that about one in 10 parents catch mistakes that physicians miss. The study suggests that parents and…
Hannah Kiresuk, 20, is a noted high school skier who has spent much of her free time going downhill. At 16, she was diagnosed with myasthenia gravis, a rare disorder…
For 21-year-old Tanner Pyeatt, the future is uncertain. Diagnosed with Duchenne muscular dystrophy at the age of four, he gradually lost the use of his legs and has been wheelchair-bound since age nine.…
Sarcoidosis is caused by tiny granulomas forming most commonly in the lungs or lymph nodes and eyes. Doctors believe it is the result of the immune system trying to fight…
Do you have hives (or a rash) that will not go away? And maybe inflammation of your joints, recurrent fevers, and perhaps enlarged lymph nodes? If you answered yes, you may…
Amber Blair, a brave 13-year-old girl from Chowchilla, California, was born with common variable immune deficiency (CVID), but she wasn’t properly diagnosed until years later, according to Chowchilla News. She…
Every so often, I hear someone grumpily complain about their high cholesterol and what they're doing to get it under control. The great majority of people will respond to a change…
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