In December 2013, the well-respected medical journal, Nature, reported that narcolepsy had been confirmed to be an autoimmune disease. In autoimmune diseases, the body's normal immune system response goes wack…
Nicole graduated high school, but was forced to withdraw from college because she suffers from dysautonomia, particularly postural orthostatic tachycardia syndrome (POTS). This disorder causes rapid heartbeat, fainting spells upon standing,…
Doctors in New Delhi, India recently made history by performing a heart bypass surgery on a young boy who has the rare condition called homozygous familial hypercholesterolemia, or HoFH. The…
Q: When is asthma not just asthma? A: When it's a symptom of Churg-Strauss syndrome. Five and a half years ago, in January 2011, Carole Cordum thought that her asthma was…
Rachel Ablondi and her husband David knew from the start their infant son Andrew was having trouble meeting common baby-milestones. But their giant wake-up call occurred during a party celebrating…
Gaucher, considered a rare, life-threatening disease, affects 1 in every 40,000 to 60,000 individuals, and in most cases, the disease is misdiagnosed, which is just what happened to 18-month-old Tamara…
If you are living with narcolepsy, no one knows better than you, that your life is not normal. Narcolepsy might be the answer to those individuals who are suffering from…
Not many diseases affect the nervous system like Parkinson Disease. Millions of people had no idea what Parkinson Disease was, or how life-changing it could be, until one of America’s…
The world was his audience, and everyone was watching. It was time to say "I have Idiopathic Pulmonary Fibrosis" If you are like most ordinary people, you are likely not familiar…
5 Tips to Maintain a Healthy, Active Lifestyle While Living With Von Willebrand Disease Von Willebrand disease (vWD) is a rare bleeding disorder, found in about 1 percent of the…
Heather Smith suffered one of the greatest losses known to humanity: the death of her firstborn son, Brandon. He was seemingly healthy until he caught a cold at six months old,…
Dysautonomia is not exactly a rare disease because it affects so many people. So, it's surprising that so little is known about this central nervous system disease, or what causes it.…
Every day, millions of people wake up hoping that today will be a good day—that today, the pain will be at a bearable level. Myasthenia gravis (MG) patients know the high…
The diabetes drug pioglitazone, has an unexpected side effect that brings hope to patients with chronic granulomatous disease (CGD) and other primary immunodeficiency diseases. This drug boosts the production of ROS in…
The last thing any parent wants to hear is that their infant or child has been diagnosed with congenital myasthenia gravis, a disease that causes various degrees of weakness in the…
Anyone with Parkinson's disease or with a family member who has the disease knows that it can be heartbreaking at times. There are good days and bad days, but the sacrifices that have to…
There are 250+ PI Disorders Out There Primary immunodeficiency disorders were once shrouded in misinformation and a general lack of understanding. Many would argue that this is still true today…
Doctors are trained to look for horses instead of zebras. You may have to inform them that zebras do indeed exist. Sometimes it seems like you are explaining yourself and Behcet's…
Myasthenia gravis is an autoimmune disease of the neuromuscular system, causing muscle weakness in the voluntary muscles of your body. While the causes of myasthenia gravis aren't always understood, it is…
While common in much of the rest of the world, Behcet's syndrome is considered relatively rare in the United States. That offers little relief for those in the U.S. who are…
Honestly, this is a crazy story-- heartbreaking, too. A young woman was told she had lupus, and spent the next seven grueling years enduring treatment, including chemotherapy and steroids, for a…
Would you climb 1,776 steps to raise money for charity? What if you were in a wheelchair? Julian Backhouse is in a wheelchair, but that isn’t stopping him from climbing…
Because her life has been defined not just by words, but by The Word, Connecticut evangelical pastor Nancy Butler (Pastor Nancy) has a Bible quotation stenciled in script over the…
Most of us are familiar with the film The Theory of Everything, which chronicles Stephen Hawking’s affliction with ALS. But there is another film just as compelling: Transfatty Lives by…
Rare diseases often go undiagnosed because they are, after all, rare. A rare disease isn't usually the first thing anyone thinks of, in light of certain symptoms. It's only when doctors know what…
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