Ramona’s Story

Ramona’s Story

 

My name is Ramona. I was born in Romania in 1986. I had a twin for 19 days, but unfortunately, my brother died quickly after birth. Throughout my childhood, I noticed that I went through far more illnesses and infections than any of my peers. I was often sick with colds, influenza, sinusitis, ear infections, cystitis, and many others, but fortunately I never suffered from septicemia, nor did I have any ”near-death” experiences. I spent much of my early life not knowing that I had neutropenia. It wasn’t until I was in my twenties when I moved to Italy that I got diagnosed. In Italy, I got tested for antineutrophil cytoplasmic antibodies (ANCA). The test was positive. This allowed me to finally get a diagnosis for my symptoms: autoimmune neutropenia.

My hematologist thought it could be a Behcet-like syndrome apart from neutropenia. However, my ANA, ENA, C1, and C3 complements have all tested negative. I also don’t have uveitis, which is a primary symptom of Behcet’s.

As part of my neutropenia, I get mouth and genital ulcers. I sometimes have problems digesting foods, which makes it a condition similar to colitis. Recently, I suffered from a really trying fatigue and shortness of breath. I had attributed it to anemia, but a renal biopsy proved I had reactive AA amyloidosis involving my kidneys and bone marrow (platelets). I have also had to undergo various bone marrow biopsies because of my severe neutropenia – my absolute neutrophil count (ANC) was below 500. 

What I hate the most about neutropenia is the fact that it keeps me under constant pressure with all the blood tests required and all anxiety they bring. I haven’t been through G-CSF therapy very often because I haven’t had very severe infections – doctors tend to give it only when I have a fever. I used it only a couple of times during hospitalization because I had a fever. I usually took plenty of antibiotics when influenza came or when going to the dentist’s.

I wanted to share my story with neutropenia so that everyone else who is diagnosed with neutropenia would understand that long term inflammation and repeated infections can, in some cases, after many years, lead to renal failure. In order to prevent this, neutropenics and those with inflammatory conditions must control their serum amyloid A (SAA) protein by running a simple blood test.

I really hope other neutropenics have it a little better than me as I have had little social life and have been fighting anxiety for as long as I can remember. Besides kindergarten, I did attend a regular school, but I missed many classes when I was little because I constantly had influenza.

My hope is that one day, researchers will discover a treatment other than G-CSF – or even better, a cure – for neutropenia.

 

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