Lets see some action
It's the Pregnancy Sickness Support conference on 11th October at the super cool Think Tank Science Museum in Birmingham. I'll be there, presenting on a range of topics and I'll have copies of our book which Amanda (who will also be there) and I can sign. And I want you there too...
Okay look, I know it's an effort when you have small children and weekends are precious and you need to sort stuff out for Monday or get chores on the house done while your husband is at home or you have a play date organised... But this is really important so stop making excuses!
If we are going to improve hyperemesis gravidarum care and treatment not just for our generation but for our daughters and granddaughters (who have a 35% chance of suffering as a virtue of being a survivor of HG) then we need to get moving. I speak to sufferers and advise women planning pregnancies on a daily basis so I know how far we have to go to get this condition recognised for what it is. I've got first hand experience of working with mainstream media who insist on calling HG “morning sickness”. And I witness the conversations on the various facebook groups where women want knowledge and research and better treatment. But I can't do it alone... I need support.
This year's conference is all about enabling families affected by hyperemesis to enact change in the world. We will be coving how to raise awareness, liaise with local and national media, support women who are going through it, building the HG community and how to use social media to promote the charity's key messages.
It will be a great day, it's easy to get to, it's only fifteen quid, which includes a delicious free lunch. You'll get to meet me and my PSS colleagues, ask questions and interact with the wider HG community. I appreciate that these sort of things can seem daunting, meeting new people and all that, but these are you comrades, your friends, your fellow survivors and you will come away feeling empowered, united, inspired.
I'm working so hard on all this, I have been for the last few years... and I need help... I need women and men affected by HG to stand up, take action, and help me. You may not know how to at the moment or may think you don't have the time, skills or experience to help, but that's exactly why you should come, to find out how you can make a difference for your daughters, nieces and granddaughters.
Please... come to the PSS 2014 Conference... I'll see you there.
NB. The conference isn't just for sufferers and volunteers, anyone with an interest in the condition and understanding it more, healthcare professionals, journalists and anyone else are all welcome to attend.
Getting to the MADS
It's been quite a whirlwind the last couple of weeks with the news that the Duchess of Cambridge is suffering hyperemesis again and the associated media frenzy that came with it. I don't know if we're really
making head way or not to be honest. The news that she was unable to go to Malta was reported without even the “acute” or “extreme” bit in front of the “morning sickness” she was reported to have. Sometimes it really feels like I'm banging my head against a brick wall.
But on Friday I travelled to London again (it's becoming a weekly commute these days, which from Cornwall is quite a chore). This time though it was to attend the MAD Blog Awards Ceremony as a finalist in the Outstanding Contribution category. And to be there, among some seriously big players in the blogging world, made that brick wall feel a little more like foam. To be nominated and short listed, from over 6,500 blogs for such a prestigious award, made me realise that people are listening. That my words aren't falling on deaf ears, that I am making a difference by harping on and on about bloody HG and all it's revolting, depressing faculties.
I didn't think anyone there would have even heard of me and my little blog, yet some amazing bloggers had actually read my blog and even want to collaborate to increase the volume of our collective voices.
Equally, there were bloggers there who had never heard of me or the condition “oh like bad morning sickness”... and so presented opportunities for awareness raising and education. Never one to pass up such opportunities I even managed to squeeze in a lecture to TV Dr Ranj about the need to distinguish between morning sickness and HG in the media and he had already seen my ITV appearance which pleased me greatly. Dr Ranj was hosting the awards, with great humour, ad libbing about his grizzly genitals and dropping V-bombs (the word vagina in a room dominated by vagina's)... As someone who talks pretty frankly about such matters most of the rudeness went straight over my head... he was reprimanded at one point for swearing and I had to ask my friend what swear word he used as I hadn't noticed: “He said s**t” she informed me, to which I replied “Oh, well s**t's not really a swear word, not like f**k or c**t”, resulting in her drink spraying across the table and out of her nose.
Anyway, I digress...
I didn't actually win the award, with the likes of Team Honk, Edspire, Gammon and Chips and other incredible blogging super-women, my half hearted blog about HG didn't stand a chance but all in my category were recognised as winners and I felt pound not just for myself but for the whole HG community that I was up there with the artisan's of this modern art.
On top of that I looked totally hot and was dripping with precious jewels lent to me by a school friend who now deals in antique jewellery on Bond Street. The food was yummy and the wine flowed generously resulting in an overall fun evening, followed by a deliciously child-free sleep and no alarm in the morning. (Note, there is life after HG!)
But you know the best bit about the bash? The inspiration... I'm upping my game... you just watch! I'm going to blog my little heart out over the next year. And should the Duchess of Cambridge go for a third baby one day, they won't be calling it morning sickness and talking about ginger – they'll call it by it's name, or at least it's initials. It's really not that hard, Hyperemesis Gravidarum or HG for short.
And don't forget, Amanda and my book, Hyperemesis Gravidarum – The Definitive Guide, will be out in just a couple more weeks... you can sign up for an alert when it's available here.
Hey Media! It's NOT Acute Morning Sickness
The Duchess of Cambridge is pregnant with her second child, and like the vast majority (80%) of women who have a history of hyperemesis gravidarum (pronounced hi-per-em-ee-sis gra-vi-dah-rum) she is suffering the condition again. My entire blog describes the misery of hyperemesis gravidarum and I wrote back in 2012 about how this might be for the Duchess so I won't rehash all that here.
What I would like to address is the appalling way the media are discussing the condition... Acute Morning Sickness! Or in fact during this morning's BBC Birmingham's radio interview they didn't even bother with “Acute” they just said she was having time off duties for morning sickness... which I promptly corrected.
“But we can't pronounce it... hyper... hyper... hyper what?” I've have numerous journalists and presenters say to me. What so because you can't pronounce it you'll just say she has something else instead? Great, that's like saying “Oh we can't say encephalitis so we'll just say so and so has a bit of a headache”.
Why is “Acute Morning Sickness” so incorrect when describing hyperemesis gravidarum?
The term Acute implies that it's a short lived condition. Hyperemesis is not short lived. It is incredibly rare to have improvement before 14 weeks (which is quite a long time when you're being sick constantly) and most women won't see any improvement before 20 week, that's 5 long months. But even for those who have improvement at 5 months, only 40% actually recover at that point. 60% are still having symptoms right up to delivery. And that doesn't even begin to address the long term physical and emotional problems women can experience.
So far from an Acute condition hyperemesis gravidarum is very much a prolonged and even chronic condition throughout pregnancy.
And then there is the “morning sickness” part of all this. Morning sickness is a cute, almost nostalgic term for a part of pregnancy which most women kind of look forward to... a bit of mild nausea and possibly the odd bout of vomiting for the first few weeks. Where the morning part comes from is a mystery to me as it can occur at any time of the day or night. However, it's a normal part of pregnancy and can be a sign of a healthy developing foetus (although that in itself isn't always true and it can increase the devastating impact for women who have felt sick for 8+ weeks only to discover at their scan that the baby is not viable).
So what should we call it? Well, the normal condition should be referred to as pregnancy sickness or nausea and vomiting of pregnancy because, like I say, it has nothing to do with the morning. And when it comes to the condition the Duchess has we should call it hyperemesis gravidarum – because that is what it is. If you really really don't want to call it that then you could at a push call it “very severe pregnancy sickness” or it's common abbreviation "HG", surely that's not hard to say?
But what harm does it do to misrepresent the Duchess's condition as Acute Morning Sickness?
The answer to that is A LOT! Belittling hyperemesis gravidarum to a normal, almost endearing, part of pregnancy does a lot of harm to those suffering what is in fact a serious and dangerous complication of pregnancy. It reduces the truth of the women's suffering, the lives ruined and the babies lost to the condition to a bit of fun, fixed by ginger!
When the media talk about morning sickness cures in the context of the Duchess of Cambridge's pregnancy it perpetuates the myths and old wives tales that prevent women receiving the treatment they need, it adds to the suffering and ultimately contributes to the loss of vast numbers of pregnancies every year.
So what can the media do to help?
Stop talking about morning sickness in relation to the Duchess of Cambridge because that is not what she has. Report on hyperemesis gravidarum because that is what she has. Stop getting doctors on TV who don't know about hyperemesis gravidarum to discuss morning sickness cures because you are causing harm.
It's appalling that registered doctors are seen to be speaking with authority about utter nonsense, like “ginger biscuits” (they are ginger flavoured... they don't actually contain any ginger!) or ginger tea. They've even stated that they try to avoid medication in early pregnancy and that every pregnancy is different, both in the context of hyperemesis gravidarum. Far from simply being untrue and non-evidenced base, both statements can cause significant harm to women with a history of hyperemesis who need to plan carefully for early medical intervention to manage the condition.
Hyperemesis gravidarum is an historically under recognised and marginalised condition for which women have had to fight at their most vulnerable and miserable time to get the treatment they need. That is despite the fact that it used to be the leading cause of death in early pregnancy and is still a massive cause of maternal morbidity and foetal loss.
It's time the media dropped the morning sickness nonsense and started to report on hyperemesis gravidarum, which the Duchess of Cambridge is suffering from. Let's address what does and doesn't help women suffering the condition, lets address the current poor state of care in the UK for HG and the fact that all women should be treated in their homes for it where possible, whether they are royal of not. Lets address the severity of this overlooked condition: speak to the women who nearly died from it (I know plenty of them); speak to the women who can't have a second child like the Duchess of Cambridge, because they don't have the medical or social support to face nine months of severe illness (I know plenty of them); speak to the women who lost their babies to this condition (I know plenty of them).
It's awful that Catherine is suffering, my heart aches for the awful situation she is going through and I hope she is getting the support and care she needs to survive this without the long term effects so many women experience. I really sincerely feel for her. However, this is an opportunity to improve the world for millions of normal women around the globe who also suffer this and don’t have access to proper care and treatment. Women who are faced with stigma and discrimination over the condition. Women who can't have more children because the condition could kill them.
Report it accurately and we could make the world a better place for all of these women. Report it badly, refer to it as morning sickness, perpetuate the myth that ginger cures it and you are hammering the nails in the coffins of the babies that have died from it and crushing any hope that women hold of their serious illness being recognised for what it is and helped.
So please British Media... journalists, presenters, celebrities, news desks, editors... it is NOT acute morning sickness... it is Hyperemesis Gravidarum.
For accurate information about hyperemesis gravidarum check out these links:
Pregnancy Sickness Support - National charity supporting women with the condition
Hyperemesis Education and Research Foundation - American charity supporting women with the condition
For interviews, quotes or pictures please contact me.
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In conjunction with Pregnancy Sickness Support and Plymouth University I am looking for women who have been treated for HG in the last 2 years in the UK to take part in a research survey. Please click here to find out more.
I am mother of three beautiful children and wife to a fantastic and supportive husband. I am a nurse, a farmer and a trustee for Pregnancy Sickness Support. I love working hard and spending time with my kids.
About this blog
Information and support for pregnancy sickness and hyperemesis gravidarum. Views are my own and do not represent those of any other organisation. Information provided here should not be a substitute for medical advice. My aim is to raise awareness and encourage sufferers to know they are not alone.
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