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.
Carcinoid tumors are very rare tumors that develop slowly in the digestive tract or in the lungs. In its early stages, there are no symptoms, but as the tumor gets…
A few months ago, I went on a rant about the FDA's failure to approve a drug that would benefit children with Duchenne muscular dystrophy, or DMD, a muscle-wasting disease.…
My cousin, Richard, lost his sight to retinitis pigmentosa when he was 35 years old. He adjusted considerably well due to his vision loss being so gradual. He had already…
It's no fun when you're plagued with back pain; you know, the kind of pain that just doesn't go away. People who have ankylosing spondylitis, or AS, know this all…
Immune thrombocytopenia purpura, or ITP, is a bleeding disorder caused by a lower than normal number of platelets, otherwise known as thrombocytes. Platelets are made in the bone marrow and when…
Mastocytosis is a rare immune disorder that is broken down into two categories: cutaneous (CM) systemic (SM) It affects men, women, and children in equal numbers. Children are more likely to have…
When the pituitary gland overproduces growth hormone (GH), its usually because a pituitary adenoma has formed. An adenoma is a benign tumor that causes the patient to continue to grow. Hands and feet…
Talk about rare diseases/ disorders/ conditions/ syndromes... there are only seven (SEVEN!!) documented cases of Gorlin Chaudhry Moss syndrome (GCM) in the world. All females. So, does as it come…
When I hear the word Parkinson's, the first image that comes to mind is a long-haired guitar player on stage, captivating the hundreds of people who'd come to hear his…
If you have Maroteaux Lamy syndrome, there's good news and not-so-good news. On the one hand, an understanding of this rare genetic disease has been reached by the medical community.…
Let's talk about medical marijuana for a moment. As soon as the word "marijuana" is introduced, people automatically think of users being "stoned," or they think of the fabled hippie…
When most people visualize Huntington's disease, a fatal neurological disease that causes the nerve cells in the brain to break down, the first thing that may come to mind is…
There's an old fable that reminds me, in a way, of primary myelofibrosis, or PMF: A shepherd is in the desert with his camel, and as night approaches, he pitches…
Multiple. System. Atrophy. Even if you know nothing about MSA, stringing those three words together doesn't sound promising. MSA is a neurodegenerative disorder that's characterized by autonomic nervous system failure.…
It was a match made in heaven when the Homecoming King fell in love with the Homecoming Queen. Several years after they accepted their crowns, they got married and planned…
Primary myelofibrosis is one in a group of rare diseases called myeloproliferative neoplasms, or MPNs. It is characterized by an overproduction of one of the three components of blood: red cells,…
Pediatric ulcerative colitis is an inflammation of the lining of the colon and rectum. The inflammation can wear away the lining, causing ulcers to form, and patients suffer from chronic…
It takes an average of seven years for a patient with a rare disease like severe combined immunodeficiency (SCID) to receive a correct diagnosis; and that comes after the patient…
According to Hershel Raff, Ph.D, a professor of medicine at the Medical College of Wisconsin, Cushing syndrome is one of the most difficult diseases to diagnose. Raff maintains that by using a…
If you have acromegaly, you know that available treatment options are very limited, so when Chiasma, a pharmaceutical company based in Waltham, Massachusetts, received notification that the FDA was not…
Bernie Mac was one of my favorite comedians. He grew up on the south side of Chicago, financially poor but determined to rise above his tough beginnings. "I didn't have to…
Cystinosis is a metabolic disease in which the amino acid cystine crystallizes and then begins to accumulate in the kidneys, eyes, liver, and white blood cells. Children are typically diagnosed…
I always have a knee-jerk reaction that borders on anger when I read about babies who are dealt an unfair hand in the rare disease world. It seems incredibly unfair…
Lora Rossi once had a vibrant, active life. She spent her summer days at the beach with friends, she had a job she really enjoyed, and her future looked bright.…
Have you ever fainted? I have. Three times and all were related to receiving shocking news. The first time was when my grandmother unexpectedly passed away. The second time was…
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