Two years ago today I was on my way to the University of Vermont to participate in a study on preeclampsia. I had a pre-pregnancy visit during which they ran a whole bunch of physiological tests and labs. The intention was to come back mid-pregnancy to run the tests again, but unfortunately I didn't make it that far. Still, it was exciting to see what is being done. They are looking for biological markers that can be used for screening patients. Right now we have little way to know who will and won't get sick. The earlier we can identify potential victims, the better we can manage them to a good outcome.
My husband, children, sister, and I also sent in DNA samples for another study looking for genetic factors. Preeclampsia is multi-causal, but at least some cases are thought to be genetic. Some of these are due to the mother's genes, some to the father's, and some to a mismatch between the two. They have already identified several dozen genes they think are involved. (Wow, this condition is complicated.)
I'm registered with the Preeclampsia Registry, which makes anonymous data available to researchers and will also contact eligible women if a study should come up that they can participate in. I encourage all survivors to register, along with their close family members, including those who have not experienced PE as comparisons.
There are current studies for a treatment to prolong pregnancies with a very early diagnosis (PRESERVE-1), for long-term health effects on survivors (HH4M), and developing better ways to educate pregnant women (must be registered with the Preeclampsia Registry for this one).
I feel very strongly about research not just for my sake but for my daughters and future daughter-in-law, who will all be at greater risk for PE because I had it.
Something I don't love: Media presentation of research.
In the last few weeks, two studies have made the news with very misleading headlines. One declared that a new treatment for PE has been discovered. On closer examination, you find a medication that has already been shown to be ineffective at treating PE, but a chemical compound in it reversed blood vessel damage in petri dishes. It will be years, possibly decades, of research before this discovery is turned into any kind of viable treatment, if ever.
The second declared that eating chocolate cures PE. IF ONLY! Turns out the title of the study was "High-flavanol chocolate to improve placental function and to decrease the risk of preeclampsia." As in, "We're going to study high flavanol chocolate to see if it improves placental function etc." Conclusion: it didn't. But the press interpreted the title as "We found that high-flavanol chocolate can be used to improve etc." Reading the full professional article reveals a poorly designed study to begin with, resulting in essentially useless data. But hey, you can eat chocolate, right?
I was lucky to have a fantastic psychology professor who taught me to critically analyze articles like these, but I've seen the pain when women get their hopes up and then dashed, or feel guilty for not doing enough. Yay for research, boo for junk reporting.
