The Preeclampsia Foundation: the voice and views of the patient and her family

Am J Obstet Gynecol. 2022 Feb;226(2S):S1254-S1264.e1. doi: 10.1016/j.ajog.2020.10.053. Epub 2021 Aug 31.

Abstract

Preeclampsia is a disease exclusive to pregnancy and the immediate postpartum period, occurring in 4.6% of pregnancies worldwide. Preeclampsia and other gestational hypertensive disorders can affect any pregnant woman. The consequences of developing this disease can lead to severe maternal and neonatal morbidities and mortalities, including fetal growth restriction, placental abruption, preterm birth, stillbirth, and maternal death. When pregnant women recover, they are at higher risk of long-term complications such as hypertension, stroke, heart failure, renal disease, and Alzheimer disease. The consequences extend to the offspring because they are at higher risk of cardiovascular diseases, and female offspring are at greater risk of developing preeclampsia when they become pregnant. For society, preeclampsia presents an economic burden related to the additional healthcare costs associated with low birthweight, prematurity, and adverse outcomes to the mother and baby. This article shares the unique perspective of affected women and their families, the effect preeclampsia has on us, and what we hope the healthcare system can deliver for our sisters and daughters in the future. Patients and their families established the Preeclampsia Foundation 21 years ago. Devoted to education and patient advocacy to raise awareness, improve healthcare practices, and catalyze research, we share some of the Foundation's realized strategies and achievements. We tell you our stories and struggles, and we issue a call to action for all stakeholders to help fulfill our vision for a world where hypertensive disorders of pregnancy no longer threaten the lives of mothers and their babies.

Keywords: Alzheimer disease; HELLP syndrome; cardiovascular disease; chronic hypertension; eclampsia; hypertensive disorders of pregnancy; lived experience; maternal morbidity; maternal mortality; neonatal morbidity; neonatal mortality; patient advocacy; patient driven; patient education; patient perspective; preeclampsia; pregnancy complications; renal failure; stillbirth; storytelling with a purpose.

MeSH terms

  • Female
  • Foundations*
  • Humans
  • Narration
  • Patient Advocacy
  • Patient Education as Topic
  • Pre-Eclampsia*
  • Pregnancy
  • Registries
  • Research Support as Topic
  • Social Support