Patient Comments: Neutropenia - Describe Your Experience

Please describe your experience with neutropenia

Comment from: 35-44 Female (Patient) Published: October 23

I am 44 years old and was diagnosed with neutropenia in my 20's. I had the bone marrow tests twice and the only thing they believe contributed to this condition is that when I was 10 years old I had my appendix out in another country and was given a very strong antibiotic (chloromycetin) that was outlawed in the US and they think the drug damaged my bone marrow. Overall, I lead a healthy life, but I need to watch for infections closely and see the doctor right away if I get sick. Sometimes, even with antibiotics, I have a hard time fighting illness or getting over coughs. I always get the flu shot. I have some family members who also have somewhat low white blood cell counts, but not as badly as I do.

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Comment from: Taylor, 3-6 Female (Caregiver) Published: September 09

I have two children. My 4-year-old daughter has been diagnosed and my 18-month-old little girl too. They have both been on folic acid from birth as they are pre-term babies, but this is a condition that has grown progressively worse. They are both classed as Chronic Neutropenia cases now. My 4-year-old did get her numbers to an acceptable level, but they have recently dipped again. She is always pale, but my baby is yellowish. We are awaiting bone marrow tests again!

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Comment from: allaboutme, 55-64 Female (Patient) Published: September 05

I was diagnosed with neutropenia when I was 49. The diagnosis puzzles me because I am not prone to infections or any types of colds, however when tested by an oncologist at least once a month, my white blood cells are consistently low. My "grams" are of such concern to the oncologist that I am given shots of neupegin (probably not spelling it right). These injections make my body ache for at least one day, and then I am back to my "normal." They do not know what caused it, but they are concerned enough to want me in at least once a month for a complete CBC.

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Comment from: Tanya, 25-34 Female (Patient) Published: August 28

I am 28 years old and was diagnosed with neutropenia when I was 17. I have been tested for various diseases over the last eight years and also had my bone marrow tested and the specialists have yet to find a cause for my neutropenia. They say it's "congenital." The problem it has given me over the past few years is often and recurring flu, throat infections and other common infections, which I struggle to fight off even with the use of antibiotics.

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Comment from: 19-24 Female (Caregiver) Published: August 13

My daughter is 20 and severely developmentally delayed, vision impaired and has been recently diagnosed with neutropenia. She has had her numbers checked for the past four months and is now seeing a specialist. The specialist is repeating every blood test imaginable for blood disorders and my daughter is also scheduled for a bone marrow test. The first results were all normal and they out ruled cancer, leukemia, etc., but we are retesting her again. Her white blood cell count has consistently dropped a point or two over the last few months. We have been told by the specialist that if she runs a temperature higher than 100.4, she is to be taken to the ER. At this point, my daughter is healthy and has had no problems.

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Comment from: Mom of Two, 25-34 Female (Patient) Published: October 15

I was diagnosed with neutropenia after a week's hospital stay over a massive sinus infection about a year and a half ago. I have a white cell count of about 1.2 to 1.9 on average. I've had a bone marrow biopsy and multiple other blood tests and my doctor can't find anything causing it. They say I am chronically neutropenic. I have had to receive IV antibiotics the last couple of times I've been sick, which has been twice in the last six weeks. To the woman whose daughter had her tonsils out, I had my tonsils out at 16 and was not diagnosed until 29. I just hope we all have great doctors who know what they are doing.

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Comment from: Brenda, 55-64 Female (Patient) Published: October 15

I am 61, but was 47 when first diagnosed with Chronic Lymphocytic Leukemia. No treatment was required. By 1997, they said the white count did not support the Leukemia diagnosis, so they changed the diagnosis to T-Cell Large Granular Lymphoproliferative Disorder, which in my case, is characterized by a low Neutrophil count. My question is, has anyone experienced chronic gum inflammation with their Neutropenia?

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Neutropenia - Treatments Question: How did you treat your neutropenia?
Neutropenia - Symptoms Question: What symptoms did you experience with your neutropenia?
Neutropenia - Diagnosis Question: In addition to blood tests, what other types of tests or exams did you have to determine the cause of your neutropenia?

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