- Conference hosted by Pregnancy Sickness Support and the British Pregnancy Advisory Service today and tomorrow in Windsor will explore latest research and treatment that all women suffering severe pregnancy sickness, Hyperemesis Gravidarum (HG), should be offered
- Exact causes still unknown, but latest research suggests genetic link which could in the future help clinicians predict women’s chances of developing the condition and pave the way for new treatments - women with a sister who has suffered from HG have 17x increased risk of the condition
- New research finds HG can have “profound effect on women’s mental health” – potentially beyond pregnancy
Experts from around the world are gathering at a conference in Windsor today to set out the latest research and innovative treatments for Hyperemesis Gravidarum. Despite recent growing public awareness, evidence suggests many women in the UK are still being denied safe, effective treatment to alleviate their symptoms.
HG has historically been under-researched and under-funded, in part as a result of the Thalidomide disaster of the 1950s. The profound effects it can have on women and their families have not been sufficiently recognised amid perceptions that it is “just” morning sickness which will pass. While treatment guidelines and public awareness of the condition have improved over recent years – in part due to the Duchess of Cambridge suffering from the condition in her pregnancies, but also due to a concerted effort by researchers and charities – evidence from the charity Pregnancy Sickness Support (PSS) suggests that around half (53%) of women have difficulty accessing treatment for their condition, which can lead to dehydration, malnutrition, and hospitalisation.
Moreover, experts will today warn that HG also has a profound effect on women’s mental health – potentially extending beyond their pregnancies – stressing the need for a shift in clinical treatment to incorporate psychological support. Researchers will highlight evidence that HG can lead to social isolation, in part due to stigma and fear of humiliation if symptoms arise while in public, depression, anxiety, and even thoughts of death and suicide. Women’s mental health can also be affected by loss of earnings or employment caused by HG.
There is no known cure for HG, although there are safe treatments which can alleviate symptoms for some women. The exact causes are also unknown, but researchers speaking at the conference are actively pursuing the genetic link which they hope will one day enable clinicians to predict women’s likelihood of developing HG, and also enable the development of new treatments for the condition.
PSS Chairperson and conference organiser Caitlin Dean said:
“Care and treatment options for Hyperemesis Gravidarum (HG) have improved massively in the last few years and research into the condition is finally attracting attention and tentative funding.
“Research to be presented today demonstrates the mental health effect of this condition can be profound and doesn’t always end when the baby is born but can persist for years after. Women can become severely depressed and even suicidal from months of isolation and the torture of the condition. HG can limit families and alter the trajectory of a woman’s life.”
Marlena Fejzo, Professor of Research on Hyperemesis Gravidarum at UCLA and USC, said:
"Mounting evidence supports a genetic link to HG. If your sister has HG, you have a 17-fold increased risk of also having HG, which is one of the largest known risk factors.
“The gene RYR2 may play a role in a woman’s likelihood of developing the condition. Through our research, we have been able to identify a novel mutation in this gene which was present in four sisters who all suffered from HG, but absent in their female relatives who did not have the condition. We have also been able to identify a novel deletion in the same gene in a patient with severe HG requiring total parenteral nutrition.
“We are in the process of uncovering other genetic links to HG in order to solve the mystery of what causes this devastating pregnancy disease. We hope to report our progress soon."
Catherine Nelson-Piercy, Professor of Obstetric Medicine and Consultant Obstetric Physician at St Thomas’ Hospital, London, said:
“Spreading awareness of available treatments and research into the condition is vital so that delegates can take it back to their own area of practice. Appropriate treatment can work but is not always instigated, maintained or escalated.”
Dr Rebecca Painter, gynaecologist and maternal fetal medicine researcher in the Netherlands, said:
“HG is just emerging from the dark ages of Freudian misunderstanding. HG presents a huge burden for the small group of women who develop it, and yet we don't understand what causes it, or what presents the best care."
Clare Murphy, Director Of External Affairs at bpas, said:
“HG can be an extremely serious condition, and for far too long women were expected to simply “put up” with their debilitating symptoms. While we welcome the growing awareness and focus on this condition, it remains the case that many women in the UK struggle to get good care, and in some cases are left with little choice but to end a wanted pregnancy. Women should have access to the full range of treatments available and above all be trusted and believed when they describe a level of nausea and vomiting affecting their ability to get on with their everyday lives.
“Every woman who suffers from HG deserves a royal standard of care.”
For more information please contact bpas on firstname.lastname@example.org or 07788 725185, or Pregnancy Sickness Support on 07932 082024. Press passes are available.
The full conference programme can be found here.
About HG in the UK:
It is estimated about 30% of pregnant women suffer from pregnancy sickness that interferes with their ability to go about their daily lives and a further 1-1.5% will be diagnosed with HG.
With nearly 1m pregnancies in the UK in 2015, we can estimate that around 10,000 women per year would suffer HG.
Pregnancy Sickness Support is a charity which provides information to women suffering all levels or pregnancy sickness and particularly those experiencing HG. It runs a helpline, forum and a national peer support network.
bpas is a charity which sees more than 70,000 women a year and provides reproductive healthcare services including pregnancy counselling, abortion care, miscarriage management and contraception, at clinics across the UK. It supports and advocates for reproductive choice. More information can be found at bpas.org.