Speakers: Marcus Green, CEO, APEC (UK). Ashley Muteti, Founder & Executive Director, Zuri Nzilani Foundation. Sabine Foehl-Kuse, Manageress, AG Gestose-Betroffene e.V. in Germany. Candace Beoku-Betts, Research Fellow , Kings College London . Lynne Roberts, Clinical Midwifery Consultant, St George Hospital, Sydney, Australia. Laney Poye, Director of Communications & Engagement, Preeclampsia Foundation (US)
Gathering Patient Voices Around the Globe
Laney Poye: Hi, everyone. My name is Laney Poye, the Director of Communications and Engagement for the Preeclampsia Foundation. We're a US-based nonprofit organization that helps raise awareness of hypertensive disorders of pregnancy. We are so thankful for all the great work that's happening in Ghana, and for being asked to just be a part of this global conversation on World Preeclampsia Day! A big thanks to the organizers and to the team at APEC Ghana for all that you all do, it can be very challenging to face preeclampsia no matter where in the world you are. That's one of the reasons that we have World Preeclampsia Day. It's my privilege to get to convene a group of organizations that work all around the globe to help mitigate the complications that occur because of preeclampsia. These organizations are there to support families in all kinds of settings and all kinds of situations. We are thankful to be a part of that, and we're thankful for all that each and every one of you are doing on behalf of women and their families in Ghana. Thank you so much for allowing me this opportunity and keep raising awareness
Candace Beoku-Betts: Hi, I'm Candace. I'm a British obstetrics and gynecology trainee currently working in Sierra Leone in West Africa. Um I have a really strong interest in preeclampsia, and as such, I here to represent APEC-I as an organization. Um, we have worked the world over most recently in sub-saharan Africa. We've worked in Zambia and Zimbabwe and Malawi; in Kenya and in South America, we worked in Brazil and the other side of the world. We've worked in the Philippines and it is our role as an organization to try to understand the lived experiences of women who have had preeclampsia in so many of these places, there isn't a word for preeclampsia and it isn't acknowledged as a disorder or a condition. And in other places where there may be a word for it, it is often seen through a lens, a religious lens or a spiritual lens, for example, in Sierra Leone, in my context and the word for um not necessarily "preeclampsia," but eclampsia is "devils sickness" and that translates to the devil's illness. Um And in like the most rural areas. And for example, when a woman has a seizure, it isn't like the doctor they call, it is often the traditional healer and this just highlights the point of the work that we want to do. And that we are doing, which is to try and speak to these communities to try and understand why a a disease that is so prevalent is so little understood or acknowledged.
Sabine Foehl-Kuse: Most of the women here about preeclampsia for the first time when they are affected themselves. Even if they had heard about it earlier, they did not bother too much to get informed. Most of them think, "Oh, it will not hit me anyway."
Ashley Muteti: Hi, my name is Ashley Muteti from Zuri Nzilani Foundation here in Kenya. And one of the most popular sentiments that we hear from women is women starting their antenatal clinics late and that are very advanced age in their pregnancy. And when they do so, some of the challenges that they face is they come to the antenatal clinics when it's already too late for the doctors to do anything meaningful to save their life or the life of the baby. And that's where we advocate for preconception care and also once a woman gets pregnant, they should start the antenatal clinics immediately.
Laney Poye: Here in the US, many women hear the word "preeclampsia" for the first time when they're diagnosed. I suspect that this is true in Ghana too. All of you as clinicians and patient advocates can be a part of changing that, making sure that every woman knows that word and understands that hypertensive disorders of pregnancy can be very severe.
Marcus Green: There is no doubt that women experience all manner of emotional problems after preeclampsia. And one of our jobs as a patient advocacy organization is to make sure that we are there for those women. We are able to help and we are able to give good advice. Um There is support available in the U. K. It could be better, but we have to do what we can we can do. Um Many women will turn to family or friends for advice and support. They will ask other people, But what's most important is they do get the help that they need.
Ashley Muteti: Women who have gone through preeclampsia, experience a lot of mental health challenges. And this is because the society has sidelined this particular type of women. As we know, women who have gone through preeclampsia can lose the baby so they can experience infant loss. They can experience pregnancy loss. They can also experience preterm, birth and this can be in subsequent pregnancies. And due to this particular issues that affect the woman because of preeclampsia, the women are at a very vulnerable point in their lives, where most of them have lost their marriages in africa and here in Kenya, Children are considered as a sign of wealth as a sign of continuity in the family tree. And so when a woman constantly loses the pregnancy or constantly loses a baby, an infant due to preeclampsia or gives birth freedom. Some people really considered these women as women who have been bewitched, you know, so they associate these medical conditions with witchcraft and this in turn creates a lot of frustrations to the women. They are degraded in the society. Women do not want to be associated with them in the community. And so they leave them sidelined. And this creates a lot of mental health issues that these women need to deal with every single day.
Lynne Roberts: I think one of the really important things that women need is to be informed, well informed, even prior to pregnancy about preeclampsia, what it is, what it can mean for their pregnancy and they also want to be informed about what will happen next time, particularly around, "Should there be a next time? And is there any way of preventing or predicting it?" So, I think informing the women is what really needs to be done.
Laney Poye: As a global community, we have a responsibility to ensure that patient voices are heard and that we create better experiences for families who face a preeclampsia diagnosis. It's quite interesting that no matter where you are on the globe, the experience of preeclampsia is quite similar, you are often quickly diagnosed. You may have confusion or concerns or worry when that diagnosis happens. And a lot of the time your baby has to be delivered quite suddenly, no matter what that scenario is, it's us who help women to know what preeclampsia is and to help them to get to care quickly should it occur. It's my hope that one day we will have better ways to predict, prevent, and prevail over preeclampsia. Your partnership is critical to that process. Thank you again for all that. You do.
