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Hyperemesis Gravidarum: List of Support Groups, Charities, Blogs and Resources

I thought it would be helpful to create a "go to" list of resources that can offer support, information and personal accounts of what it is like to suffer from Hyperemesis Gravidarum.

These are all groups, blogs and resources I have come across in the past year while researching for the book I am writing. If you know of any others that I have missed, or have a blog of your own, please do send them to me via my contact form or on twitter

 

Charities and Support Groups

UK Based

Pregnancy Sickness Support is a national charity here in the UK that aims to inform and support women, their families, and those involved in their care. They have a wealth of information on their website and run a volunteer support network and a telephone helpline. 

Pregnancy Sickness SOS is another UK based site providing information on HG.

US Based

The Hyperemesis Education and Research Foundation (Her) is a US based site which also has a huge range of information, research and support available for sufferers, their families and healthcare providers.

The Ayden Rae Foundation is an organisation that is fighting hard to aid the discovery of a cause and cure for HG. 

Beyond Morning Sickness is a site dedicated to raising awareness and sharing the stories of HG survivors. There is a book of the same name, which many HG sufferers read and rely on, and which was the inspiration for producing a UK based book (which is what I am currently working on). 

Canadian

The Motherisk Program in Canada carries out lots of research into pregnancy complications and possible treatment options for them, including HG. Some of their research is included below.

European

Steunpunt HG is a Dutch website offering support and information to HG sufferers.

 

Support Groups

UK Based

Pregnancy Sickness Support (Hyperemesis) UK (Facebook Group) 

Partners' Pregnancy Sickness Sickness Support (HG) UK (Facebook Group)

Mumsnet Hyperemesis Support Board

BabyCentre Hyperemesis Group

US Based

HelpHer Forums

 

Resources

NVP and HG "Cheat Sheet" 

I wrote this "cheat sheet" as part of the book and have reproduced it as a PDF download for easy access. 

Diary for NVP and HG symptoms

Pregnancy Sickness Support have put together this fantastic printable weekly diary for monitoring symptoms of nausea and vomiting during pregnancy. 

 

Blogs

Instead of splitting this group according to country, I have decided to make two groups: "current blogs" (those which have been updated recently) and "archived blogs" (those which have not been updated in the past 3 months, but may still be of interest). 

Current Blogs

HG Survivor

Beadzoid

Mother Eartha's Blog

My Story of Hyperemesis

Knocked Up Knocked Over

Hyperemesis Gravidarum: Through The Fog 

The Leaky Boob

Spewing Mummy

 

Archived Blogs

Midwife to Mum

HG Sucks

My Friend Zofran

HGDad

Hyperemesis Gravidarum: A Journey Through Our Second Pregnancy

Hyperemesis Heroine

Baby You're Making Me Sick

 

Twitter Feeds

The following people on twitter are very active in the HG community

@HGSupportUK 

@AydenRaeFDN 

@Jenni_Wynne 

@pwynne82 

@JaynieN 

@Angeline1611 

@pandabear_rocks 

@KnockedUp_Over

@MumtoAandB

 @HGHusband

 @Mum2LilyandPops

@lauren___d

@Comfortably_Mum

@midwifetomum

 

As with anything, this is not an exhaustive list. Please, please do let me know if you have any other links I can add to this post!

Hyperemesis Gravidarum: The Importance of Awareness and Accurate Reporting

I’m pretty sure that most people have heard the news about the Duchess of Cambridge being admitted to hospital for Hyperemesis Gravidarum (HG). I’m also just as sure that many are thinking “oh just get over it!” because that is the reality of HG, hardly anyone knows what it is or understands how truly awful it is. And unfortunately, with the media using terms such as “acute morning sickness” and relying on the limited knowledge of doctors who have no specialist experience in this area (no disrespect to them, it’s just it is a very specific area), this isn’t going to change very fast.

And so, as a HG survivor who has dedicated most of the first year of her child’s life to researching about the condition, writing a book about it, networking with others and raising awareness, I feel it is time to turn over my blog for a while to the subject.

So let’s start by passing on my sincerest best wishes and support to the Duchess. Hyperemesis is a truly awful condition, terrifying in its severity, isolating in the fact no one understands what you’re going through, and a battle from start to finish. If, like most of us, her symptoms peak between around 7 and 10 weeks, it is going to get worse before it gets better, and could be with her throughout the entire pregnancy. And she has to do this all in the public eye. My heart goes out to her, as it does to any woman suffering from HG!

So what is it?

Well, for starters, it is a severe form of Nausea and Vomiting of Pregnancy (NVP). The term itself basically translates as lots of vomiting (hyperemesis) in pregnancy (gravidarum). It is not “morning sickness”, in fact we need to get away from using that term altogether. It is an outdated term, that trivialises the condition, not only for those with HG but also those with mild-moderate symptoms.

NVP affects up to around 80% of all pregnant women in some form or another. Perhaps this is why there is so much judgement and so little support and understanding for those with more severe forms. If your experience of NVP is that you “felt a little queasy” for a few months  you may find it difficult to imagine the severity from which some women suffer. However, around 30% of women require time off work to cope with their symptoms, and 35% have symptoms that are of clinical experience. So whilst only around 1% of women suffer from HG, NVP is still nothing to be laughed at!

For those 1% who do develop HG, their pregnancy can go from joyous to a nightmare in a matter of days. The severity of sickness doesn’t just build up slowly, it can go from next-to-nothing, to manageable, to totally debilitating within a week. So for all those who wonder how the Duchess could have been so very active and well last week and hospitalised this week, that is why.

Thankfully, since the invention of IV hydration, HG is not the life-threatening illness it once was. However there is still a major need for treatment. Women with HG become dehydrated easily, they can suffer from electrolyte imbalances which can lead to further complications, and they can lose weight extremely quickly. HG is often described as being present in women who lose more than 5% of their pre-pregnancy weight, but many women lose double this amount and more.

IV hydration and anti-emetic medication can help to control the symptoms and make eating and drinking more manageable for the HG sufferer, but unfortunately due to so much misinformation and a fear of treating pregnant women, many have to fight for the treatment they need and deserve. This should not be the case! There is plenty of research out there that includes safety data of various anti-emetic medications and the importance of timely treatment. I have included links to some of these at the bottom of this post.

There is a lack of awareness in the medical community. Many GPs and midwives continue to treat women with HG as having “morning sickness”, giving out the usual advice of “eating little and often” and trying “ginger”, neither of which are helpful for a woman who is vomiting multiple times each day and unable to function. There is a real need for better education on the condition, and it seems there is also a very real need to raise awareness of it in the media as well.

I feel both sorry for the Duchess and relieved that it is finally being covered by the media. But we have a long way to go. Even the BBC is using the term “acute morning sickness”, and this needs to change. The charity Pregnancy Sickness Support, who I am closely connected to, are working tirelessly to change this. But we need help. We need you to retweet, to reblog, to share on other social media sites, to work with us to effect change.

Please don’t just read this news and think “poor Kate” and then forget about it. HG affects a woman for life. Antenatal Depression, Postnatal Depression and Post-Traumatic Stress Disorder often accompany a HG pregnancy. Women and their families affected by it are left with the awful decision of whether to face another pregnancy to expand their family or choose not to have any more children. It doesn’t end after 9 months. So please, read about it and spread the word.

For more information check out:

Pregnancy Sickness Support

Hyperemesis Gravidarum: List of Support Groups, Charities, Blogs and Resources

My info page on Hyperemesis Gravidarum

The Hardest Decision (my post on choosing not to have another pregnancy)

please feel free to email me your own links to add!

References:

Asker C, Nordstedt Wikner B, and
Källén B. 2005 Use of antiemetic drugs during pregnancy in Sweden.
European Journal of Clinical Pharmacology 2005; 61: 899-906

Christodoulou-Smith J et al. 2011
Posttraumatic stress symptoms following pregnancy complicated by
hyperemesis gravidarum. The Journal of Maternal-Fetal and Neonatal
Medicine

Ebrahimi et al. 2009 Nausea and
vomiting of pregnancy: using the 24-hour Pregnancy-Unique
Quantification of Emesis (PUQE-24) scale. Journal of Obstetrics and
Gynecology Canada 31 (9): 803-7

Einarson et al. 2004 The safety of
Ondansetron for nausea and vomiting of pregnancy: a prospective
comparative study. BJOG: an International Journal of Obstetrics and
Gynaecology 111: 940-943

Farrell N. 2008 Hyperemesis
gravidarum: how midwives can help. The Practising Midwife, 11: 12-14

Gadsby R and Barnie-Adshead AM. 2011
Nausea and Vomiting of Pregnancy a Literature Review. Pregnancy
Sickness Support Website

Ismail SK and Kenny L. 2007 Review
on hyperemesis gravidarum. Best Practise & Research Clinical
Gastroenterology 21 (5): 755-769

Jarvis S and Nelson-Piercy C. 2011
Management of nausea and vomiting in pregnancy Clinical Review
article. British Medical Journal, 2011-12-23, 342; 1407-1412

Koren G et al. 2005 Validation
studies of the Pregnancy Unique-Quantification of Emesis (PUQE)
scores. Journal of Obstetrics and Gynaecology 2005; 25 (3): 241-244

Koren G. and Maltepe C. 2004
Preemptive Therapy for Severe Nausea and Vomiting of Pregnancy and
Hyperemesis Gravidaum. Journal of Obstetrics and Gynecology 2004; 24;
500-503

Matok I et al. 2009 The Safety of
Metoclopramide Use in the First Trimester of Pregnancy. The New
England Journal of Medicine 2009; 360: 2528-35

Mazzotta P and Magee LA. 2000 A
Risk-Benefit Assessment of Pharmacological and Nonpharmacological
Treatments for Nausea and Vomiting of Pregnancy. Drugs 2000, 59 (4;)
781-800

McCarthy FP et al. 2011 A
Prospective Cohort Study Investigating Associations between
Hyperemesis Gravidarum and Cognitive Behavioural and Emotional
Well-Being in Pregnancy. Plos One, 6: 7.

McParlin C, Graham RH, and Robson
SC. 2008 Caring for women with nausea and vomiting in pregnancy: new
approaches. British Journal of Midwifery 2008; 16 (5)

 

What I learned this week

This past week I have been busy.

And I have learned a lot.

In fact, I've learned so much I think I'm going to have to split this into three parts.

Here goes…

What I learned at the Pregnancy Sickness Support Annual Conference

  • It is an incredible feeling to be in a room full of people who have experienced the hell of severe NVP and HG during pregnancy. Knowing that whatever you say will be answered with a "YES! That's so true!" or "I know exactly what you mean!" rather than the "Have you tried ginger?" and "I was sick too, but I just had to get on with it" (as if simply surviving every new day wasn't "getting on with it" enough) was ever so slightly mind-blowing.
  • The need for local support groups as well as online support groups is crucial. If a single day in the company of people who truly understand made me feel that great, just imagine how much of a difference we could make to so many women suffering during pregnancy!
  • I'm not the only one who was never hospitalised, and that I should stop saying, "I never vomited, I only ever brought up bile and suffered from awful nausea" because that is still extreme and traumatic and devalues what we went through. Thanks Mother Eartha for that one!!
  • The experience of severe NVP and HG can have as much, if not more, of a traumatic effect on the partners, parents and friends of sufferers as it does on the sufferers themselves. Often it was the mum or husband who struggled to talk about their experience. This needs to be highlighted and makes me glad I have planned a section in the book to cover it.
  • There are some experienced and talented volunteers who have so much they can do to help raise the profile of the charity and build up funds. It makes me so proud to know that people come from all walks of life to try and make a difference to others following their own experiences.
  • I want to do so much more to help the charity Pregnancy Sickness Support and I need to work out how I can use the skills I have to help them the most.

What I learned from BritMums Live

  • There are so many ways that I can use my blog to raise awareness of the things I am most passionate about. 
  • I do not want to work with brands and look at monetizing my blog. Reviews, sponsored posts and advertising are extra work that I'd rather not do right now and though I've dabbled in these on here for the past few months I don't think they really fit. I enjoyed blogging without any responsibility to anyone but myself and my reader and bringing in brands just complicates things. If I review anything from now on, it will simply be because I have bought/used something and truly loved it and think everyone should try it.
  • It's going to be hard to turn down offers from brands. It is so alluring. But I need to stay true to what I want from my blog.
  • Finding my voice is esential. I have known this for a long time but I just didn't know what it really was. Everything and everyone seem to suggest finding a niche, but I don't have one. I forget who said this, but someone said 'our lives are diverse so why shouldn't our blogs be diverse too?' I still need to find my voice, but I'm guessing it centres around passion, support and honesty!
  • Engaging with your audience involves writing things that they can relate to. Finding the words to touch someone's heart (whether that be in a way that makes them feel passionate about a cause too or which makes them laugh and think "that's just what my life is like too") will give my blog a really good energy.
  • I don't post enough photos on my blog, and by utilising light I could take some really amazing photos even with my phone. I want to practise this as soon as Tim is free and willing to be a test subject!
  • I should write about what feels good to me, rather than trying to write what I think will sound good to my audience. It is so easy to get drawn into stats and popularity and I know I have fallen for this so many times. But remembering why I started blogging reminds me that I just wanted to write, and so I should just write and enjoy it.
  • You'll always find bullies and trolls online, but I need to remember that they are everywhere. If someone attacks my work I need to remember it isn't an attack on me personally. And if I see someone attacking someone else, I can always step in and counter-comment. We need to all stick together to get rid of cyber-bullies.
  • eBooks are a great way of getting your work out there. I have so many things, not just the HG book, that I could ultimately turn into eBooks (or PDF downloads if they are heavily formatted and might not translate to eReaders very well). This may be a much better way of earning a bit of extra cash than selling out to advertising and brands which I feel won't sit right on my blog. Advertising and reviews work for some blogs, but they don't work on mine. I need to find my own product, and eBooks may be the way to go.
  • Google+ may not be as bad as I thought it would be. I didn't want "yet another thing" to look into, but it may be worth having a look before deciding one way or the other. I don't want another "twitter" where I avoided it for years only to find I actually loved it once I finally joined.
  • Some blogs are big hits, but there are just as many bloggers out there who are still "small fish in a big sea" and enjoy blogging for the fun of it.  I'm much more like them and should be proud of that in my own way. 
  • Having the confidence to speak up and share your experience or ask a question can lead to some amazing connections and conversations. 
  • So many people have been through such heart-breaking things and the community and support offered by blogging is immense. Grief is grief, no matter what caused it or what form it comes in. By standing together we can find common ground and support each other through things.
  • Sometimes changing our voice is hard. If we've been writing about something emotionally charged and then switch to something lighter and/or more positive we may lose some readers who liked the drama of it all. But we'll always gain new readers. 
  • Dad bloggers are lovely and I want to spend more time reading their blogs and getting to know them. There shouldn't be this distinction between "mummy" bloggers and "daddy" bloggers… we're all parents!

What I learned this week as a whole

  • I like going to conferences and could get used to travelling, staying in a hotel (especially in London) and meeting up with people, discussing things I am passionate about, and learning new things
  • I want to use my voice to help change things. I am a strong writer and I am also discovering that I am quite a strong networker (and, possibly in the future, speaker too). I should be using these abilities to make change, especially as I enjoy doing it!
  • I need to learn to let go once in a while. I don't have to have control over everything in my life all the time.
  • Seeing pregnant women and babies no longer hurts me quite the way it did before. I must be finding peace and healing in some way. That just blows my mind.

I am sure there are so many more things I learned this week. But these are the major ones.

Tell me, what have you learned this week?