Are you pregnant? Do you want to help the HER Foundation make progress in HG research and treatment? Participate in HG research today! We have two ongoing studies for women who are currently pregnant.
HG Care App Study: Mothers in 1st trimester
If you are currently in your first trimester suffering from nausea and vomiting of pregnancy, PLEASE participate in our new HG Care App study. Download the iOS HG Care App from the Apple Store and contact Dr. Fejzo at firstname.lastname@example.org. You will be asked to provide brief feedback on your pregnancy symptoms and outcomes via surveys during the study. If you feel too sick to use the App, just ask a family member to enter the data. It only takes a few minutes a day and can be very helpful in managing HG.
Please note: this is a research study and participation is voluntary. Your decision whether or not to participate will not affect the treatment you are currently receiving nor your relationship with your health care provider.
Nutrition Study: Currently pregnant HG mothers
All pregnant mothers with HG can participate in our nutrition study. Help us learn about the usage and impact of vitamin supplementation on your symptoms during HG by taking this survey. Fill out the survey before and after you receive vitamins or nutritional therapy like TPN. If you are unable to input your data, ask someone in your family to type in the data for you.
Thank you for helping us make progress in managing HG!
The HER Foundation is pleased to announce it has joined MoMMA’s Voices, a national coalition of patient organizations and individuals with lived experiences or those who represent them, using their voices to reduce maternal complications in pregnancy and the postpartum period.
With the wave of media and public attention on the growing and unacceptable rates of maternal mortality and severe morbidity in the United States, this coalition answers the need for a strong consumer voice to advocate, amplify, and illustrate these issues in the US. MoMMA is short for Maternal Mortality and Morbidity Advocates, which captures the coalition’s mission.
For survivors and family members of the HER Foundation, we encourage you to share your story, join the training, and use your voice to be a champion for change. If you have already shared your story with HER or with another source, you can simply copy your link into the story section after completing the demographic section of the submission. Speak up, even if your voice is shaking.
HER joins the coalition that includes other organizational members Amniotic Fluid Embolism (AFE) Foundation, Black Women’s Health Imperative, Every Mother Counts, National Accreta Foundation, Preeclampsia Foundation, 2020Mom, The Shades of Blue Project, Sepsis Alliance and others still to be confirmed.
The coalition’s overarching goal is to provide a home and platform for the patient voice to actively engage in efforts to make childbirth safer in our nation. Issues like patient-provider communications, racial disparities, quality of healthcare delivery, and patient information cut across all medical conditions and heavily contribute to preventable maternal deaths and illness. Most importantly, it will provide training and tools to equip advocates to become effective champions for change.
MoMMA’s Voices offers opportunities to drive real change in maternal health. We’re excited about this step for maternal health and HG progress!
The International HG Awareness Movement began in 2012 when the HER Foundation held the first HG Awareness Day on May 15th.
On May 17, 2012, the Governor of North Dakota, Dennis Daugaard, issued an Official Executive Proclamation for the HER Foundation naming May 15th to be HG Awareness Day! “We want to thank Governor Daugaard for being the first Governor to recognize HG Awareness Day, and we are encouraged by his recognition of the need for awareness for HG women in his state. We hope it will inspire state lawmakers to follow in his footsteps for future Awareness Days. This is a huge step in raising awareness, education, and research. We are truly grateful,” said Ann Marie King, Co-Founder of the HER Foundation.
Since the first HGAD with the theme of “Pregnant and Starving for Answers,” the international movement has grown to include organizations and people from around the world. The HER Foundation is proud to be the global leader in awareness, research, education, advocacy, and support for the HG community.
HER has achieved many firsts including over two dozen ground-breaking research studies including those identifying the first genes associated with HG, developing HG assessment tools and protocols, and creating the first HG Care app to improve tracking and reporting of symptoms and treatment. HER continues to be the voice of hope and help for HG.
Support the work of HER to ensure continued progress for the next generation!
As a service to moms with a current or prior diagnosis of HG, the HER Foundation will host free, monthly online support groups via GoToMeeting on the third Thursday of the month from 12:00 – 1:00 PM/CST. Currently, there is a limit of 150 participants. Follow the Facebook event for updates and reminders.
The purpose of this online support group is to help moms to connect with other survivors of this devastating pregnancy condition. Regardless of how long it’s been since your traumatic pregnancy with HG, we hope that by connecting we can continue to heal. These online groups will be facilitated by HER Foundation Board Members and HG survivors, Sarah Coffman and Elizabeth Lowder. Both Sarah and Elizabeth are mental health professionals that treat women with HG in St. Louis, MO.
Title of Meeting: “HG Support Group”
Please join my meeting from your computer, tablet or smartphone.
(For supported devices, tap a one-touch number below to join instantly.)
You can also dial in using your phone.
United States: +1 (646) 749-3129
Australia: +61 2 8355 1050
Canada: +1 (647) 497-9391
United Kingdom: +44 330 221 0088
Access Code: 163-541-877
New to GoToMeeting? Get the app now and be ready when your first meeting starts.
Learn more about GoToMeeting and how to join a meeting.
Come Home to HER for HG Awareness Day 2019, and be a VOICE in the HG community, your local community, the media, or on social media! Help spread awareness about Hyperemesis Gravidarum! One voice. One story. YOUR story may be all it takes for someone to hear our message of education and advocacy, that HG is more than what you see!
- Meetup with another HG family.
- Donate to get more answers.
- Volunteer with the HER Foundation.
- Add our Facebook frames and join our Facebook event.
- Use the International HGAD logo.
- Wear a tougHGirls of HG tee.
- Be a VOICE…in the HG community, with the media, and on social media.
SHARE THE FACTS
- HG, hyperemesis gravidarum, is a pregnancy disease marked by rapid weight loss, malnutrition, and dehydration due to unrelenting nausea and/or vomiting.
- HG is not the “morning sickness” of healthy, normal pregnancies. It is a distinct diagnosis marked by severe and relentless symptoms that pose significant risks to the health of both mom and baby. Over 1/3rd of HG babies do not make it to term.
- HG babies are at increased risk for low birth weight, small size for gestational age, and preterm birth. In utero exposure to HG is linked to a 3.6-fold increased risk of emotional/behavioral & developmental disorders.Nearly 20% of HG pregnancies are lost to therapeutic terminations, citing “no hope for relief.” Current treatments are not adequate to prevent termination of these planned, wanted pregnancies.
- Mothers with HG’s most severe forms can experience pneumothorax, organ rupture, retinal detachment and blindness, eardrum and jaw damage, rib fractures, esophageal tears, the neurological syndrome Wernicke’s encephalopathy, or even death.
- 18% of women report full criteria of post-traumatic stress syndrome (PTSS) following an HG pregnancy. More than half of mothers have post-traumatic stress symptoms.
- In 2009, inpatient treatment for HG in the U.S. cost more than $250,000,000. HG is the leading cause of hospitalization in early pregnancy, and is second only to preterm labor as the most common overall cause of hospitalization during pregnancy.
After three years of hard work by HER Foundation and UCLA Health, we celebrate the official public release of the first HG Care iOS app! Now women can track their symptoms and treatments to find out what’s working. Plus they can easily share insights into their progress with family and health professionals. The app is free. Remember if it makes you ill to use your phone, just have family input your data.
DOWNLOAD the app: https://itunes.apple.com/us/app/hg-care/id1148105670?mt=8
We’re starting the next chapter at HER as we kick off our 15th Anniversary!! From scientists to business experts, health professionals and digital health specialists, HER has assembled a team vast expertise! We launched our formal Board of Directors with an awesome meeting that discussed many ways to support families during/after HG, improve treatment by educating health professionals and launching the next version of the app, changing treatment protocols and public policy, and reaching more of the international community. Watch for many new opportunities to be part the next decade of HG progress!
This year, we are celebrating HG Awareness all month long because the HER/UCLA/USC team has identified the first cause of HG! That is truly groundbreaking and only happened due to your donations and participation! Let’s spread the message far and wide that no longer can others erroneously claim HG is a psychological disorder! See all the activities on our FB Events page. Here is a summary:
- Thunderclap – shout the message simultaneously!
- Facebook Live on May 15
- Meetup with another HG family
- Donate to get more answers
- Use our Facebook frames
- Share our posts on social media
What is the HG breakthrough we co-published in Nature Communications?
This study provides scientific evidence linking 2 genes, GDF15 and IGFBP7, to HG. These genes provide the instructions to build the proteins GDF15 and IGFBP7 in the human placenta during pregnancy. The proteins are known to be important in the development of the placenta and in controlling appetite. We have done additional work presented at the ICHG (vimeo.com/260389622) showing that not only are these genes linked to HG, but also, the proteins are abnormally high in the blood from patients hospitalized with HG.
HER Foundation helps UCLA, USC and 23&Me link debilitating pregnancy illness to two genes
FINALLY A BREAKTHROUGH FOR women suffering from the severe pregnancy illness, hyperemesis gravidarum (HG). Many people remember Princess Kate Middleton being hospitalized during her first pregnancy due to the severity of the disorder. However, other women affected by the pregnancy illness have limited family size, quit their jobs or sadly felt so desperate due to the debilitating illness that they terminated wanted pregnancies. Many HG women describe the illness as something no one can truly understand unless they have endured it themselves. Instead of the joy every pregnancy should bring, HG women spend most of the 9 months suffering in silence unable to eat or simply keep water down.
The HER Foundation, researchers at UCLA and USC, and 23andMe, Inc. conducted the first genome-wide analysis of Hyperemesis Gravidarum (HG) and identified two genes associated with HG, which was published this week in Nature Communications. (https://www.nature.com/articles/s41467-018-03258-0). Continue reading