Vivien’s Story

My name is Vivien, and I have Cyclic Neutropenia, which is a rare blood disorder. It’s a disorder of a type of white blood cells called neutrophils, which normally help fight bacterial infections.

My white blood cell count goes up and down in a 21-day cycle and usually lasts for about three to six days. At the dangerously low point, without treatment, something simple as a cold could kill me. 

I was also anemic on and off after having kids, needing iron infusions on a regular basis. My primary care doctor discovered at a routine check-up for my anemia that I had abnormally low white blood cells. I was then sent to a hematologist who monitored my blood counts three times a week for six weeks. This is how the cyclic pattern was diagnosed. 

I am at risk of contracting a severe or even life-threatening infection every three weeks throughout my life. During episodes of neutropenia, I experience low grade fever, general ill feeling, inflammation, loss of appetite, and I am abnormally susceptible to bacterial infections that often affect my digestive and respiratory systems. 

GCSF shots are given for this condition to help the bone marrow produce neutrophils. The shots come with side effects such as allergic reactions, back pain, fever, dizziness, and shortness of breath, among a host of others. For me, medication is very tricky, as I also suffer from Crohns. But it is what it is, so I take it one day at a time and I can proudly say that I am one in a million!

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