Written by Amanda LaClaire
I’m her brain, haha. Sheryl’s more creative-minded and I’m more numbers oriented. I have a PhD in mathematics and do medical researching, uh, kind of everywhere. She’s a full-time teacher and understands things like art. That stuff just goes completely over my head. Numbers make sense to me.
(We just have two different kinds of minds is all; I don’t actually mean that I’m smarter than her.)
This is our first time coming to the Conference. Sheryl has idiopathic neutropenia and I’m her sister. We’re both from Pennsylvania, respectively, but like I said, my work requires me to travel. It was a last-minute decision to come here. We heard about the Conference two weeks ago and here we are. Our goal is to see about getting Sheryl’s dose lowered. She’s not as young as she used to be, so we’ve got to take osteoporosis into consideration. I mean, she already has all the markers that suggest she’s likely to get osteoporosis: female, over fifty, white, and the medication at this dosage isn’t doing her any favors.
The start of our journey began in 2009. Sheryl had gone in for a routine colonoscopy, but they noticed in her pre-procedure blood tests that her counts were low. Unfortunately, the doctors dismissed her low blood count believing that she was just fighting off an infection. We immediately set up an appointment with the hematologist. I was not about to let this go. What can I say? She’s my sister and I get protective. Sure, there was a point when we considered she might in fact be fighting off an infection. After all, Sheryl’s a full-time teacher at an alternative school. She’s constantly around children and kids. It would have been entirely possible that she picked something up from one of these students, except that she kept getting sick. She’d go weeks without teaching due to illness. You can’t be a “sometimes teacher,” so it was better to be safe than sorry. Sadly, this hematologist didn’t work out as well as we hoped.
So, began our doctor hopping adventure. We saw a naturalist doctor who had Sheryl on some different cleanses, but that didn’t work. There were other doctors we saw, too. Their diagnoses were ridiculous. One doctor claimed it had something to do with her urine, which I knew didn’t make a wick of sense. I’m still mad at that one doctor who completely dismissed Sheryl. We had travelled essentially the length of New England to see this guy, so we thought he’d be good. The only answer we got was essentially that she should be an adult about it and stop being dramatic. The whole drive home we sat in silence. He made Sheryl cry! That doctor had lost any sensitivity training he learned in med school. It was so wrong.
Eventually, Sheryl decided that enough was enough and we stopped seeing doctors. From 2011 to 2014 she basically just lived her life. I did, too, but she just kept getting sick. That same year, 2014, Sheryl agreed to return to our original hematologist. The original hematologist tested her for cyclical neutropenia because at this point we had noticed some patterns and did our own research via Google. Sheryl didn’t have the right markers for cyclical neutropenia, but she did indeed get diagnosed with idiopathic neutropenia.
Soon after Sheryl received her official diagnosis, our hematologist connected us to a Boston medical fellow who helped us get on the Registry. Now, here we are. Hopefully, we can get this doctor to listen to us and lower her dose. The Conference has been great so far in helping us navigate adulthood neutropenia, so things are looking up it seems.