Saving lives, donating plasma to help those living with Evans syndrome

Barbara Napier, a 33-year-old mother of three, spends her days taking care of others, both at home and at her job in an emergency room (ER). For her, the transition from saving lives in the ER to saving lives by donating plasma was easy, especially after her son was diagnosed with Evans syndrome in 2021. 

“My son is battling an extremely rare disease. His body is attacking itself,” said Napier.

Evans syndrome is an ultra-rare autoimmune disorder in which the immune system destroys the body’s blood cells. It’s a combination of at least two of the following disorders: autoimmune hemolytic anemia (AIHA; autoantibodies attack red blood cells), immune thrombocytopenia (ITP; autoantibodies attack platelets), or autoimmune neutropenia (AIN; autoantibodies attack neutrophils, a type of white blood cell). The Genetic and Rare Diseases Information Center (GARD) estimates that fewer than 5,000 people in the U.S. have Evans syndrome.

The exact cause of Evans syndrome is unknown, and the exact symptoms that indicate Evans syndrome vary from person to person, along with the combination of the three conditions involved (AIHA, ITP, and AIN). 

For example, when red blood cells are attacked and are low, symptoms may include:

  • Jaundice.
  • Dark brown urine.
  • Pale skin.
  • Weakness.
  • Fatigue.
  • Shortness of breath.

When experiencing low platelet levels, symptoms may include:

  • Increased bruising.
  • Petechia: tiny red dots under the skin.
  • Increased bleeding symptoms.

When neutrophils are low, symptoms may include:

  • Fevers.
  • Mouth sores.
  • Increased infections and illnesses.

There is no one test to diagnose Evans syndrome. Instead, medical professionals conduct various tests to rule out other conditions. The tests include:

  • A complete blood count.
  • A direct or indirect Coombs test.
  • Direct antiglobulin test (DAT).
  • Bone marrow biopsy.
  • CT scans.

There is also no cure for Evans syndrome. Treatments are directed towards specific symptoms and personalized for each individual case. One treatment often used to help those with Evans syndrome is intravenous immunoglobulin (IVIG) replacement therapy, which Napier’s now 8-year-old son receives two to three times a month. Immunoglobulin is created using donated plasma, and since there is no synthetic substitute for plasma, those with Evans syndrome who rely on IVIG depend on plasma donors. 

“My son has taught me a lot about life with everything he has gone through. He’s a fighter!” Napier said.

Napier was donating plasma even before her son’s serious diagnosis. As someone who works in the emergency room at a local hospital, she understands how beneficial plasma can be in saving someone’s life.

“My experiences [donating plasma] have been smooth and painless. They are quick and very rewarding,” says Napier. She plans to continue donating plasma and encourages others to do the same. 

Feeling inspired by Napier’s story? You, too, can help save lives by becoming a Plasma Hero! Submit your story to us and be featured as one of our Plasma Heroes.

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