Misunderstanding of Neutropenia: A General Misconception of the Medical Community

Severe Chronic Neutropenia is an illness with no face.  Most patients with the condition “look healthy.”  Yet, within a few hours, they can be in a hospital with acute symptoms, in acoma, and even worse, dead.   So don’t let that “health look” fool you.

Severe Chronic Neutropenia is NOT the same physiologically as neutropenia caused by cancer treatments.   But because SCN is so rare (only one in a million), most physicians and hematologists/oncologists fail to recognize this distinction and, therefore, downplay the SCN condition as being “benign” if there are no outward symptoms.  However an SCN victim can be symptomless for weeks and/or months, and then one day be acutely ill with a fatal infection in the ICU in the hospital.

It is important that you have your child’s CBC tested for their ANC (white blood count), and if it is low, do not accept a “do nothing” prescription from your doctor.  Be sure to contact the experts at the Severe Chronic Neutropenia International Registry and consult with them to see if your child has SCN, and if so, what your physical needs to be do in order to avoid possible loss of limb and/or loss of life.

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