Story about Evans Syndrome .

16 yr old fighting mystery autoimmune illness

Dec 13, 2015

By: Lari


My daughter has been fighting her autoimmune illness since she was a baby.  At 4 years of age she was finally hospitalized and the doctor's began researching for answers.  She was an enigma to our team of doctor's. Her illness is similar to Evan's Syndrome and incomplete Behcet's Disease.  She has antibodies to, but not limited to red blood cells, platelets, white blood cells, and neutrophils.  Seattle Children's has been our second home as she has been frequently hospitalized due to fevers with neutropenia and horrible mouth ulcers that lasted for months.  She frequently has an inflammed liver and always has a inflammed spleen.  She has had frequent sinus infections that resolved after surgery.  Scarring of her lungs from pneumonias.  Allergies to tree-nuts, seasonal allergies, and asthma.  She has donated to several studies at the NIH and Seattle Children's Hospital/University of Washington.  Our family helps with fundraisers to support Seattle Children's.  We are hopeful a cure will be discovered in her lifetime.

We send a shout out to others that are battling autoimmune illnesses and other life-threatening illness.  Keep fighting!  There are many companies that have family members effected.  The fight has become personal. They are working day and night for a cure.  

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