Hyperemesis Gravidarum Support and Research Forums

by **annmarie** » May 31, 2004 4:29 pm

Hi this is Ann Marie and I just wanted to introduce myself. First I wanted to make sure you ladies knew of two articles recently published in top national magazines. This first is American Baby, May issue, this article mentions the foundation. The second is Health magazine and it too mentions the foundation. I am not sure what issue in Health. I am in the process of getting approval from the publishers to have the articles on our site.

I wanted to see what some of your ideas are for rasing awareness, I have a couple. As you might know we tried the writing Oprah month, but to no avail nothing happened. So I am thinking of other outlets. I am also thinking we should approch O magazine instead of the show. I was also thinking about doing a month to write into the the TV show the View. What are your thoughts?

Look forward to working with you!!

by **dwtegli** » May 31, 2004 8:31 pm

I know not everyone will be willing to do this, but a couple of weeks ago, I emailed my local news network with a link to this website and told them my story. On Wednesday they are interviewing my doctor and coming out to my house to interview myself and my kids about hyperemesis. I don't live in a major city, but I do live across the river from the capital of ND (Bismarck) and that is where the TV station is based. It is a small market, but the reporter mentioned that alot of their segments get picked up by the national networks, so you never know. Maybe if more people can try writing to their local networks, we can get them interested? I just wrote to the local NBC station by looking up their contact information on their website. I will post when it will be broadcast as soon as I know and maybe they will be able to tell me if it will be picked up nationally. I will let you know as soon as I do.

by **annmarie** » May 31, 2004 8:43 pm

That is great news about you contacting your local TV station and they are coming out to do a story and talk with your doctor!!! Please keep me informed. If you can please make me a copy of the TV report.

I have been hitting the big markets and they have showed no interest, so I am glad to hear that smaller markets are willing to listen. Smaller market stories to get picked up often, so I will keep my fingers crossed!

Congrats!!

Ann Marie

by **RebeccaM** » Jun 01, 2004 1:23 am

Just wanted to say "hi" and I'm so excited to be moderating this forum with annmarie and jjbeck! I know annmarie has done some awesome work at getting HG publicized and I'm excited to be a part of the whole HelpHER website.

Wendy,
Good luck with the interview. Definitely keep us posted on when the story airs and how it goes. I think writing to local media outlets can be very effective. There are some local news shows in my area that I am going to try to contact about doing a story on HG.

Annemarie,
I love your idea to write to the View. I think it would be a great topic for the show. I'm also really interested in raising awareness in the political world. I haven't thought much about specifics, but an HG awareness day/week would be so great. (I hope my ideas aren't too ambitious)

I would love to hear your take on it.

by **Lil7Deb** » Jun 01, 2004 2:56 pm

I think the View is a good idea, however I think any major talk show that does serious things such as Oprah, or the Today show would be just as effective.

Also I think we should hit up magazines such as Baby Talk, and websites such as www.babycenter.com to have information available when mom's under things to watch for in pregnancy.

I'm going to have to get an issue of American Baby so I can read the article.

by **jjbeck** » Jun 01, 2004 7:02 pm

Hi Ann Marie. I have a few of ideas re awareness. I have limited time at this second but will try to catch up later.
One thing though, I think sometimes letting the news or shows come to you may help. Some ways this may work is holding public events such as fundraisers. The publicizing of events can get lots of attention and if lucky a local paper or news program may find interest in the story. My sister does lots of fundraising for a number of orgs and this itself brings a great deal of awareness.
I think to the idea of brochures be of great help. The more people see the word HYPEREMESIS I think the better.

by **annmarie** » Jun 29, 2004 8:05 pm

Hi ladies,
Sorry it has been awhile. As you may have read we had some great articles published in Health Magazine and in American Baby, both in May issues. In speaking with a writer at Health, she told me that they have recieved all kinds of mail in regards to the article, which is great news!

So I am starting to think of our next steps. We have recently heard of a couple of deaths from HG in the US, so we really need to get some info out into the public. I know you liked the View idea, but now I am starting to think Oprah again, but not the show, the magazine. Since we have had two big articles written already in two national mags it might be helpful to try and do the O Magazine pitch, which could turn into an Oprah show. I was thinking of doing it similar to the way we did the Oprah Show. Have a "Write O magazine month" on the site and tell her your story about HG. What do you ladies think? We are really limited with what we can do, because financially we are just not capable of doing any big campaigns. So let me know. Hope you are well!! :)

by **RebeccaM** » Jul 02, 2004 9:18 pm

Hi Annemarie!

i am just stunned by the recent HG deaths that we've heard about through this forum. I have a hard time even thinking about it. It's very upsetting. And I think, for that reason exactly, it could be a hard-hitting point for HG awareness.

I think Oprah would definitly be the ultimate when it comes to getting HG publicized. And O Magazine is directly connected to the Oprah name, so I think it would be a great idea. Maybe we could hit both the show and the magazine at the same time with a write-in campaign. We could hit 'em from both sides! :wink:

Well, that's my 2 cents. Let me know if I can help you with anything.

by **Valerie Cruz** » Jul 06, 2004 3:16 am

Have you guys ever thought of making posters/signs or ads like in the doctors offices and along the freeway or in the magazines.

Example:

Hyperemesis Gravidarum
Do you have it?

contact info or info on meds or could say 'talk to your physician' or a contact physician for that state

by **emily** » Jul 13, 2004 10:39 am

How about writing Dear Abby?

by **Katagillian** » Jul 22, 2004 9:25 am

Hello!

I'm a little shy about bringing this up, but I am trying to get HG noticed in my own small way. I'm a writer, with one published short story (amazingly I wrote and published that story while I had HG!)

In the last year I've written a novel for the Christian romance market. In in my main character has HG (as they say, write what you know) I recently submitted the novel to a publisher and had it turned down only because they felt the romance was overshadowed by the HG. *smile* HG will do that to you. They recommended selling it as women's fiction, something that publisher doesn't handle. Otherwise they felt the writing was very good. Hooray!

So, now I need to prepare the manuscript for a publisher of women's fiction and try again. I want very much for this novel to be published. If that were to happen, I plan on including a "note from the author" sort of page with information about HG and where you can get help. I like to think a novel can educate in a subtle sort of way.

So that's what I'm up to. And just because I'm off writing novels doesn't mean I'm not willing to help make people aware in other ways. I took partin the Oprah write in campaign and I would be happy to do so again.

Has anyone considered contacting Dateline to use HG as one of their "Surviver's story" segments?

by **RebeccaM** » Jul 27, 2004 2:50 pm

That's so great that you've written a novel about an HG sufferer! I really hope you can get it published. Let us know if it does. I would love to read it!

by **danimomof2girls** » Aug 04, 2004 1:02 pm

Wow guys,
Such great ideas!!! I just wanted to let you know that you have another strong supporter out there. I had the worse case of HG that my doctors had ever seen in Knoxville, TN (and we're a pretty large medical community). My doctor was awesome in handling my second pregnancy (my first doc didn't even know how to diagnose it and had no idea what to do with me even after I lost 19% of my body weight in the 1st trimester!)
I will be glad to do anything you guys decide and I think we need to keep knocking on Oprah's door. I think that if she personally knew the earth shaking statistics about HG and it's effect on women's health, she would be more interested. If you choose a date, maybe we can all submit a letter within the same few days or something. I don't know how that works, but we have to do something to catch their eye. I know that HG is short term (lasting 9 months) but its effects go way beyond the pregnancy. It is hard on a marriage, finances, emotional wellbeing and changed my overall health! We have to keep trying girls! I think this forum has been great for those who log in, but what about the ones who are sick out there and have no support? I didn't have any during my pregnancies and I think it would have made a world of difference for me!
I'll keep checking into this forum!
PS - Has anyone thought about contacting TLC or Discovery Health channel?

by **IslandDreamer** » Aug 05, 2004 12:35 am

I'm on a mission that begins Friday with my own doctor. I asked her if I could help her establish a loss protocol as she doesn't have one :shock:

and plan to bring brochures, etc. about hg as well as information about postpartum mood disorders. (I'm a fun girl, aren't I?)

After I get a better sense of what works with my doctor, I will approach other practices. Is there anyway to team up with other women's reproductive causes and steam roll ALL our agendas with sheer numbers.

In addition, I have asked the founder of the MISS Foundation to cross post our link as well as emailing Kimber asking that we list MISS. Still trying to decide which ppd site would be the best cross link. So many women and doctors are on so many sites, that we could really increase our visibility this way.

Also, I don't think HER has to be more than it is. . .what I mean is, I feel safe and comfortable talking about my sweet Hope here, but the goal of this site is to bring hg pgs to term. Make sense? My grief, while real and respected, is not part of HER's role. . .I think it is okay to redirect women to other sites after a loss or after fullterm delivery if the need arises. After their grief subsides a bit (ya right), or the ppd becomes controlled, they will return in a supporting role or on the ttc board, or they may be like me and be part of both groups. I continue to visit here since my m/c to encourage and offer suggestions, and I will do so for years to come.

And I think we should continue to activitely connect with groups studying mood disorders as the hg makes us prime candidates.

Anyway, to make a long story longer, I was asked by the MISS founder to put together a proposal for what I want to see added to the site.

And Kimber and I are emailing about an article I'm writing with her, so I know she is pondering the new relationship as well.

I would also encourage every person on this site to add hg and www.hyperemesis.org to their signature at other forums. I've gotten questions and requests for information this way. People see my sig at MISS and some actually check out the site here. And these parents see the words [i]hyperemesis gravidarum[/i] as often as they see my name.

by **danimomof2girls** » Aug 05, 2004 10:45 am

Suzanne,
I agree with you...I feel safe here too and I think that is the draw of this forum. If there is anything I can do to help you and Kimber with the article, I'll be glad to! As I said, I was the most severe case my medical community had ever seen (I had a list of specialists: Hematologist, Gastrointestinal Specialist, Endocrinologist, Surgeon and OBGYN). I would be glad to offer any personal experiences in detail if you need them!

by **J&Jmom** » Nov 23, 2004 10:03 am

I'm a Marine Corps spouse living on a Navy base. All pregnant women here, either active duty or spouses, have one meeting with OB/GYN, from which it is determined if they'll stay w/OBGYN or be referred to Family Practice for the duration of the preg. At this meeting, everyone is given a book titled "Pregnancy and Childbirth, A Goal Oriented Guide to Prenatal Care." It's interactive, in that it's also a planner where you can write when your appts are, who they're with, and has info as what to expect at each appt... The last page of the introduction has a list of websites to be used as a source for more info. I would love to get a link to your site in this book.
Even with my HG, I'm not considered high risk (which I'm greatful for.) I'm lucky to have a family practioner who has done lots of research on HG for me.

I don't know who to contact to have this done, but the front of the book states: VA/DoD (Veteran's Affairs/Dept of Defense) Uncomplicated Pregnancy Clinical Practice Guideline - Dec. 2002. The version of the book I have is 2.1, Feb. 2004

The back of the books states: This patient education booklet was prepared by the U.S. Army Center for Health Promotions and Preventive Medicine (USACHPPM) in support of the VA/DoD Uncomplicated Pregnancy Clinical Practice Guideline (www.OQP.med.va.gov/cpg/cpg.htm; www.QMO.amedd.army.mil).

In the section titled "Discomforts of Pregnancy" there is a section called Nausea (morning sickness), and it lists all the typical things that don't help HG'ers, like "Nibble some crackers before getting up in the morning and when you are feeling queasy." No where does it say anything about going to the ER, getting fluids, or medications possible when you can't keep anything down.

It's so frustrating for me to see such a lack of awareness of HG. If you go to the website, I'm sure you'll find the contact info for getting more info on HG into future editions of this book.

I don't know who the right person is to contact them on this issue, but since I'm not in the medical community, I don't think I'd get far. Please let me know if there is anything else I can do to help you get in contact with them.

Good luck in spreading HG awareness,

Danielle

by **Kadinga** » May 11, 2005 9:30 pm

Hi,

I can see that this thread hasn't been active in a while, but I have a few of thoughts that I'm not sure if I can do much with personally or on my own.

1) Has anyone thought of going after Dr Phil? They've done shows about managing PPD and menopause and how that affects families, maybe a similar angel on HG would work, too? If people who live in California, or probably even anywhere in the US wrote in on the "be on the show" option on the website, there might be a response? I wrote in, but being outside the US, I didn't expect much response to my own letter.

2) Does the Enjo company operate in the States? If I knew of an Australian branch of HER, I'd be suggesting this to them. Enjo are a cleaning product company that sells by party-plan, and the idea is all about cleaning without any chemicals at all. Having looked at the long strand in Foodments about people reacting to smells (the topic starts out on personal hygene products), it occurred to me that some sponsorship from a company that sells no-smell products might work to advantage on both sides? Enjo make such a big thing about how environmentally friendly and family friendly their products are, and imagine how great it would be if every Enjo consultant mentioned in every party that "Our company is so community minded, we are supporting research into this condition".

3) I'm writing to my state's Spina Bifida foundation in the hopes of getting into their newsletter. I'm thinking of this angle because the higher dose of folate that people linked to SB are required to take can aggravate things a great deal. My SIL, who's family never had a pregnant sick woman before had to take the dose because of her husband's family link to me, and she was very sick, but still within the bounds of morning sickness. I really wonder if I would have moved into the HG category if I hadn't had to take so much folate. My point is not to discourage people from taking the folate, but to let them know that there is support available if it makes them that sick, and if the folate makes people more likely to be sick, then doesn't that make SB Foundations and Associations a target audience?

Let me know what you think...

Amanda

by **danimomof2girls** » May 14, 2005 6:56 am

Wow, great ideas. I never thought of Dr. Phil. I assumed that since we tried to contact Oprah, maybe we tried other avenues like hers. I think it would be great to have more awareness. With my first pregnancy, I was treated as if I were a problem child and that I was causing the vomitting. I literally felt like there was something wrong in my head. Thankfully we had moved with my second one and I received incredibly care and to have it finally diagnosed gave me such comfort to know that I wasn't simply crazy!!! I just feel terrible for the ones out there who go through this alone. It's a horrible feeling. You want so badly to embrace your pregnancy, but in reality, it feels like an awful nightmare at the time.
Let me know what I can do to help you guys in your efforts!

by **Kariinbliss** » Jul 12, 2005 10:58 am

I'm all for writing to anybody you all ask me to! :-)

I do think Dr. Phil would be a good one. I do wish that I had allowed pics of myself to be taken when I was sick (cruising around the house with my IV pole), so I'd have something to SHOW people how awful I looked because of the HG. How many others of us have allowed pics taken when we looked like crap? Maybe in the future we should take those so we have something solid to show the TV people. (I'm sure some of you have, my pride just got in the way) It's hard for people to look at me now and imagine how things were. Guess it's like when Dateline follows around a gal who is anorexic. They don't want to see her after she has recovered, they want footage of her as emaciated as possible. Does that make sense? On another note... has anyone looked into having "HG survivor" bracelets (like the Livestrong ones) made? That could raise money and awareness at the same time.

Lastly... I was on fertility friend the other night and had the stunning event of mentioning HG and TWO other women in the chat room had had it. It was amazing!! This site had been my only other connection to people who had ever HEARD the term "hyperemesis" before. It floored me! Anyhow, I gave out the addy for this site and they promised to check into it. They are both ttc, and looking for protocol ideas. :-)

This site is a literal lifesaver for so many people. Thank you so much!!!

by **Kadinga** » Jul 13, 2005 5:02 am

Love the bracelets ideea, and T-shirts too. If they sold them on this site for fundraisers I'd definitely be buying them.

Amanda

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