? for IVYDRAGON: Clusters of HG - is it possible?

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? for IVYDRAGON: Clusters of HG - is it possible?

Postby SusanElder » Jun 07, 2004 10:25 pm

IVYDRAGON -
I don't know quiet how to phrase this or ask my question. Has anyone ever looked at where HG is occuring in the world and if there are any clusters? I know this sounds strange but I just got in touch with my best friend from highschool that I haven't spoken with in 13+ years. We only lived a block or two from each other growing up. We are both in different parts of the country now. The wierd thing is - she had HG too with her 2nd pregnancy. She made it through the pregnancy with multiple PICC lines and phengren etc. It just seems odd that two women who grew up together and do not have a family history of this get it. HG is not very common. I am just blown away about this and was wondering if anyone had ever looked at it that way. I joking said to my mother that this is another Erin Brockivitch story since the place we grew up in is only a couple hundred miles away! I know it is far fetched but?????

Just courious -
Susan

Lost #1 10/15/03
TTC in July '04 and praying things are different! Update: We are pregnant! I am due March 26th!
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Postby Ivydragon » Jun 13, 2004 12:56 am

The biggest difficulty would be in tracking who had HG! Most HGers land in a hospital, but not all. Most HGers are diagnosed, eventually, and many many go undiagnosed at least one pg! I keep wanting to put up a map of the world on my wall, with a little pin and name for each HGer I run across and where they are from. I am thrilled to discover two in the same general area, country, etc. It's a dream to one day know that in each area or state there is a HG group that can work with Drs. offices and hospitals to help educate and support new HGers so that they don't feel alone, like all of us felt that first pg.

It is very unlikely there are clusters of HGers, and if there are nearly impossible to trace or find out about. I found HG on a list of "Island Diseases" once - because HG just isn't common enough for people to know other people w/ HG. Many HGers on here have never met another HGer face to face. I've met 5, and only 2 of them through casual conversations outside of this discussion forum!

It'd be cool if there could be a registry of all HG cases, just so the numbers could be reported accurately, but that would require all Drs. to actually admit that HG was real, and reportable, lol.

Hugs, Andy
Mom to Aaron 14 (HG), Anna 11 (HG), Adam 8 (adopted), Andrew 8 (adopted), fostering a newborn . . .
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Postby jjbeck » Jul 06, 2004 10:23 pm

hmmmm. maybe when we send out brochures to doc offices, we can also ask them to fill out a questioneer with questions like:
What is Hyperemesis?
What is the criteria for dx HG?
What are the treatments for HG?
How many HG cases do you see a year?
etc...
Jen 34
HG X2

DH Bob
DD Ava 4/04
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Postby Ivydragon » Jul 11, 2004 12:43 pm

That'd certainly be interesting. I wonder if we'd get much response back. Probably even better w/ postage paid on it, but that would take $.

Andy
Mom to Aaron 14 (HG), Anna 11 (HG), Adam 8 (adopted), Andrew 8 (adopted), fostering a newborn . . .
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the government is an issue for us

Postby IslandDreamer » Jul 19, 2004 1:18 am

Hi,

One of our battles with educating doctors and the public about the reality of hg is going to be fought with the government. The US Department of Health and Human Services collects data on hg, but they only track hgers who are treated as INPATIENTS. So for all of us who got fluids and othe treatments in the ER and through home healthcare, we don't count. Kind of outrageous, eh? :x
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Postby Ivydragon » Jul 19, 2004 6:18 pm

That is very frustrating. HGers are very prone to ER visits, and many more are preferring home IV.

You know, Insurance Companies probably have the best numbers on the true number of HGers.

Andy
Mom to Aaron 14 (HG), Anna 11 (HG), Adam 8 (adopted), Andrew 8 (adopted), fostering a newborn . . .
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