Tomorrow, June 6, is my twentieth anniversary. On this day in 1991, I had a doctor’s appointment. I had been bleeding and bruising a lot over the past year, so as soon as school let out, my mom dragged me down to the pediatrician’s for a thorough checkup. Late that afternoon I was playing in the living room when the phone rang. It was bad news, I knew it. When my mom got off the phone she told me to pack a bag because we were going to the hospital.
Turns out that all the bleeding and bruising was caused by an autoimmune disorder called Immune Thrombocytopenic Purpura (ITP). Simply put, it means that my immune system stopped recognizing my platelets as part of my body and started attacking them. My platelet count twenty years ago was 2000 per microlitre. Normal, as the Wiki page will tell you, is 150,000 to 450,000. I had a tube in my arm for a week. That week also marks the last time that anyone was able to get a good vein in my arm. They’ve retreated and now all blood tests have to be done from my hands. This is why no one is allowed to touch the backs of my hands.
When I got out of the hospital, they gave me steroids. The doctor told me, “You may gain weight and it may stunt your growth.” May should not have been a part of that sentence as both certainly happened. Please not also there was no mention of roid rage which I had a bad case of and ruined my social chances for middle school. We shall not speak of the roid rage again.
My count just wouldn’t stay up, so eventually I was sent up to Duke University for a specialist. At first we thought I was going to get a bone marrow test. For some reason, in the early 1990s, Readers Digest ran a whole bunch of medical stories in which people had bone marrow tests and I read them all. I knew what that meant and I wanted no part of it. Fortunately they decided to put me on a FDA study. This meant that I had to have another round of the IVIG, which didn’t work, so they could establish that it didn’t work. :rolleyes: As was expected, it didn’t work. Then I got put on a drug that did work: AntiD. One of the main reasons I got put into this study is that I’m severely needlephobic and AntiD only takes two minutes to run in as opposed to four hours for the IVIG.
In 1996, a paper was published in a medical journal. I found that article a few years ago. In it, the effects of AntiD on a small group of ITP patients is discussed. I was the 16-year-old mentioned in that article. My doctor told me I had the best reaction out of anyone in the study. Sometime in the late 1990s, AntiD was approved as a treatment for ITP patients. You’re welcome.
The intervals between my trips to Duke got longer and longer. When I was on IVIG, I had to go up there every week. When I got AntiD it became once a month. Then once every couple of months. Then four times a year. I had to get weekly blood tests to monitor my count and these results were duly sent to Duke. When I went to college in 1998, I got a dose of AntiD before I shipped off to Pirateville. I got weekly blood tests and they stayed remarkably high. When I came home for summer vacation, my mom and I went back to Duke for a check. That was the last trip as I was declared officially In Remission. And there I’ve stayed for twelve years.
It’ll probably come back eventually. I understand that every woman has a Big Change scheduled in their late middle age and since the first Big Womanly Change triggered my immune system to go nuts, this probably will too. I’m okay with that. I know what to expect now.
In closing, I would like to point out that AntiD is made from human plasma. I can’t donate plasma because of the ITP, but if your blood is good, please consider donating. The life you save may be my own.
This I know.
