HG touches and affects all parts of a woman's life, and part of the support we offer is advice in trying to decide what information to believe. So many women are told myths for treatment, and that HG doesn't happen every pregnancy. We are still counteracting wrong presumptions about HG.
The current website and organizations you see here are rather young. My first HG was 12 years ago - few people had computers, let alone internet access. I didn't know anyone else who had HG, and despite having a mild case, was the most sick of anyone I could talk to. My 2nd pregnancy was in 1997. My husband and I found some information on the internet which told us that we were lucky I wasn't dead, or hadn't bled from my eyeballs, and should have been having lots of eye appointments. Great - lots of help!
In 2001 I personally began reseraching HG. By then Kimber had her first HG site up,
www.hyperemesis.org, and home internet access was common - and I found a discussion forum at delphi called the HuGS forum. There was no active moderator, the creator wasn't actively posting, and there were around 20 women. Within a year it had grown, and I asked for ownership. 2 1/2 years ago I moved it here, merging with Kimber's forum so that there would be one excellent resource for education and support. The forums you currently see are only 2 1/2 years old.
We actually have women who have now been volunteering their time for years for devoting support and time towards helping other HGers after them. Still, as Pamela mentioned, the turn over rate here is very high. Gradually more and more women stick around after their births to help support other HGers, but many are here for their pregnancy, and then gone. It's reasonable to expect so. We are women in our prime. We are in child bearing and rearing years, and we are bearing and rearing children. All of us either have a child, or children, or are pursuing a child or children. We know about HG, and face the reality of the impact in our lives. Without the internet, the possibility of knowing another HGer is a relatively small thing. I've met 3 outside of the forums, and none of them are friends, or have felt the need to keep in touch purely because we both had the same pregnancy diagnoses.
For quite some time we didn't have two HGers from the same state, let alone similar geographic regions. Now we've seen HGers meet in real life, but only a few since pregnancies are the main goal around here, and they aren't exactly conducive to travel and new friendships in real life.
It has long been a hope of mine that we can grow large enough to establish local chapters - but funding is out of the question - it'd all have to be grass roots self-funded attempts. That's what it's all been. All $ that is donated is put directly into research. No one has been paid for their time here - except for the web computer people. Much of the funding to keep things going comes from the pockets of those who are devoted to its creation. All of the women here who are in positions of responsibility volunteer their time. Keeping moderators in all positions here has been a challenge, let alone even contemplating trying to keep women actively helping in a local capacity.
We are hoping that by having an interactive online community that women form lasting friendships and create a net of connection that stays strong for decades - because research needs to be done on the long term impact of HG - for our children, and for ourselves. In the meantime, I'm hoping that we can continue to have a strong online support group. We have over 1,600 registered users - that's a really tremendous growth rate - but we certainly don't have 1, 600 active posting daily users. Eventually, we hope to develope local support groups, but it can't be rushed, and it depends largely upon the decision of each HGer after their last pregnancy. Do they move on and forget HG ever touched their lives, or do they stay involved despite knowing that they will never conceive again? You can check out the adoption and the no more for me forums - look at the number of posts compared to those of the 1st, 2nd and 3rd trimester forums - there is a large majority of HG sufferers who are not yet done fighting HG in their own trenches - and we're going to need a whole lot more who are done with pregnancy wanting to stick around before we can develope a stable enough system that would support local chapters.
If you have questions about preparing a protocol and taking a realistic look at if another HG pg is right for you - feel free to seek me out in the preparing for HG forum.
Andrea
Mom to Aaron 14 (HG), Anna 11 (HG), Adam 8 (adopted), Andrew 8 (adopted), fostering a newborn . . .