Eosinophilic granulomatosis with polyangiitis (EGPA), also known as Churg-Strauss syndrome, causes inflammation of the blood vessels. It affects approximately one in 500,000 people in the United States. There's no cure, but symptoms…
El Congreso respaldó la ley de curas del siglo 21 y hará su camino a la Casa de Representantes esta semana. Después de recibir un voto unánime 51-0 del Comité…
There are 30 million people in America with a rare disease. That is about 1 in 10, or 10%, of the population. Keep on fighting the good fight, every post…
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…
"Hardships often prepare ordinary people for an extraordinary destiny." -C.S. Lewis People with rare diseases are not ordinary people. The hardships they endure turn them into extraordinary individuals because they…
When Angela Clarke was just hitting the teenage years, she craved the attention wearing high heels would bring her--plus, being short in stature, she saw them as a quick fix to…
If you think about the definition of rare, you realize just how accurately it describes people with rare diseases. You are one in a million and you are precious to…
People with ankylosing spondylitis (AS) already have a lot on their plates trying to cope with the symptoms of this inflammatory disorder that mainly affects the spine. In severe cases, vertebrae…
Happy Independence Day! For those of you in the United States, usually the Fourth of July weekend is a filled with fun celebrations and family. But what about those of…
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…
Con siete millones de personas en el mundo, hay mucho que nos hace diferentes -- riqueza, la ubicación geográfica, la familia, los intereses. Pero nuestros puntos en común? El ecualizador…
Diane was suffering from severe fatigue, so she went to the doctor and he told her to retire and settle down because she is going to die soon. She decided…
Happy American Independence Day Weekend Patient Worthy! What happens when you look into the mirror and the person staring back isn't who you were expecting? One word: acromegaly. Do you or…
“She had blue skin, And so did he. He kept it hid And so did she. They searched for blue Their whole life through, Then passed right by- And never…
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,…
Anyone thinking of unsolicited advice they've been given, from people who don't understand their illness? 9 times out of 10 chronically ill patients don't want to hear what you think…
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…
Jana and Sara are 32 year old twins, born and raised in North Dakota. We had the pleasure of speaking with both of these precious young ladies about their rare…
Vanessa Garrett, una mujer con la enfermedad de Crohn, la inmunodeficiencia variable común (ICV), y Leiomiomatosis Hereditaria y cáncer de células renales (HLRCC), esta agradecida por su vida a pesar…
Jessica Gimeno has five diseases, one of those is myasthenia gravis. In her Ted Talk she talks about dealing with those, along with having depression. Go watch! I love that she…
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…
Have you heard of myasthenia gravis? If not, that's not surprising considering it is a rare disease, with about 20 out of 100,000 known sufferers. However it is probably under-diagnosed and those…
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…
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…
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