miércoles, 20 de junio de 2012

Evans Syndrome , the Community - RareConnect

Evans Syndrome , the Community - RareConnect




Evans syndrome is rare autoimmune disorder defined by the combination (either concurrently or sequentially) of an attack on two or more lines of blood, including red blood cells (Autoimmune Hemolytic Anemia), platelets (Ideopathic Thrombocytopenia or ITP), and white blood cells.

It has a name... by Constance published 8 days ago

This is my account of what if was like when I first found out I have Evans Syndrome. Thanks for reading! It was late December 2004. I was new to the city of Phoenix, Arizona...transplanted from a much smaller Midwestern city about 1600 miles away. I waved at the departing train carrying my son, Doug, back from whence I'd come, feeling a little nervous, anxious, but ready for the changes I ...

Rollercoaster by rdc-team published 9 days ago

In April 2010 at age 14, our son, David, had a low platelet. He was hospitalized in nearby Brunswick, Georgia, and treated with Intravenous Immunoglobulin (IVIg). His platelets rebounded. The diagnosis was idiopathic thrombocytopenic purpura (ITP). Several weeks later, David began experiencing nosebleeds, but no increased bruising. Today we know that his primary indicator of low platelets is bl...

Constance's story by Constance published 14 days ago

My name is Constance. I am 51 years old. Seven years ago, I was diagnosed with Evans Syndrome. There were signs that I had a problem with my immune system for many, many years, actually beginning around age 2 when I was first diagnosed with a severe allergy to penicillin. Around age 7, I was diagnosed with eczema. At age 15 I was placed on birth control pills to control crazy menstrual cycles....

Solving a Mystery by rdc-team published 14 days ago

Not so long ago, our lives were changed by a phone call I received from Jess—the girlfriend of my 21-year-old son, Colin: Since moving to Philly, Colin developed pneumonia and pink eye. I had chalked this up to burning the candle at both ends. But what Jess was telling me now was a lot harder to explain: Colin was always tired. He was suffering from intense night sweats. His skin color was some...

Our Journey through Evans Syndrome by rdc-team published 29 days ago

Zachary was diagnosed with Evans Syndrome at the age of 5, after a 17-day stay at the Children’s Hospital of Philadelphia. Our journey started on the Fourth of July weekend while visiting family. Zachary had an infection on his leg and suddenly spiked a fever; when we brought him to the emergency department we were told that his white cell count was zero. We were admitted, and Zack underwent bl...

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