Hello! My name is Vanessa. I am 35 years old, and I have been living with neutropenia for more than half of my life.
It all began when I started coming down with constant sinus infections, which then turned into mouth sores, abscesses, and increased healing time from minor procedures or surgeries (i.e., getting my tonsils removed). My pediatrician ordered blood work due to the constant infections, and she gave my results to her husband since he was a hematologist. He discovered that both my white blood cells (WBCs) and my absolute neutrophil count (ANC) were extremely low. He advised that we do a full work up of blood work, which turned into weekly blood draws, and eventually, my first bone marrow biopsy. He saw from my bloodwork that the decrease in my WBCs was not cycling, and my bone marrow was producing an adequate number of WBCs and neutrophils. That was the good news. The bad news was that no one knew why my body was killing off the neutrophils. At the time, I was misdiagnosed with Idiopathic Neutropenia.
For five years, I treated my infections with antibiotics and went through many hospitalizations. I would receive high doses of Neupogen only when I was admitted to the hospital. I changed hematologists two times within those years due to insurance reasons, which actually ended up being a blessing.
When I was around 21 and started seeing the new hematologist, he brought up the possibility of a daily at-home treatment of Neupogen. That sounded amazing, but the medication was so expensive that even with insurance, it just wouldn’t have been a financial possibility. We found that it was actually cheaper with our insurance to receive a daily Neupogen injection through the outpatient clinic at the hospital! My amazing mom started to do a crazy amount of research about my blood disorder and what we could do to find the right care and guidance. This is how we found the National Neutropenia Network and the Severe Chronic Neutropenia International Registry (SCNIR).
We got in contact with the SCNIR and started doing weekly complete blood counts and other tests that were needed. It took around one year to be accepted into the registry, and I began to receive my Neupogen through them. I have been a part of the registry for over a decade now, through which I have been on either daily or every-other-day Neupogen use.
At age 25 and 28, I had children. I used Neupogen daily during my pregnancies and was able to manage my neutrophil counts. Both of my children were born completely healthy, although this is how we found out I truly had Autoimmune Neutropenia, not Idiopathic Neutropenia. My first child was born with low WBCs and ANC, just like I had, so we did a full blood work up on him. All tests came back normal, and his blood counts rebounded after four months. The same happened with my second child, whose blood counts rebounded after six months.
I still go through times where I am healthier than others, and I am still definitely very cautious about potentially infectious situations. Despite it all, I was able to graduate college as an Occupational Therapy Assistant and have worked in the healthcare field for over 12 years.
I’m a wife, a mom, and a Neutropenia warrior!