Hemochromatosis Support Group

Hemochromatosis is a hereditary disease characterized by improper processing by the body of dietary iron which causes iron to accumulate in a number of body tissues, eventually causing organ dysfunction. It is the main iron overload disorder. Hemochromatosis is notorious for having symptoms that are often initially misattributed to other diseases.

518 Members

2,097 Posts

0 Online

Megan-Leigh-McDonald 04/28/2011

Hey everyone,
part of what I do when I go through changes is that I write. Therapeutic really.

Anyways, I also discovered what a lack of resources there are in America for people with Hemochromatosis. And what a lack of awareness there is.

I started a blog and intend to write it in several times a week right now.

Please go take a quick peek and make some comments and send it around.

I'd really like to get some good information there so please suggest topics that I can research and dig into that will help other people.

Since I now work at Google and need to use our products, I might even do a short ad campaign to push it out but want some good content first.

http://irongal.blogspot.com/

many thanks!
Meg

deleted_user 04/28/2011

I visited, now what?
Just kidding. Thanks for trying to promote awareness.

Megan-Leigh-McDonald 04/28/2011

hehe...thanks for visiting...let me know if you think there's anything you'd like me to cover...

deleted_user 04/28/2011

Megan, your blog is great!!!! I would love to see some type of campaign to put HH out. My desire and passion is to see genetic testing for HH to become standard from birth, and to see people (and especially the Medical Field) become educated on the condition. If this can be accomplished, just think of how many HH related conditions could be prevented and how many lives can be saved! Keep us updated on whether Craigslist helps with a support group. I would love to see that happen in here in the Las Vegas valley.

Thanks!

Billie

Megan-Leigh-McDonald 04/28/2011

Billie - I concur. It seems like a 'no brainer' to screen for ferritin or the genetic mutations doesn't it?

deleted_user 04/28/2011

Megan,
Part of what we aim to do with HemochromotosisSociety of New York is get HH out there. Get the name known with advertising and marketing. This is what we need. No one can help us, if no one knows we exist. Interesting that Hemochromotosis was not in the Webster's Dictionary. It was a 2004 Edition. I found it in American Heritage though :-) We need to get people to notice us!!!

deleted_user 04/28/2011

Hi Meg,
I like it! I shared it on my facebook page, too.
On line 1-2 you have Daily Strength as ".com" but it is ".org"

Good Luck with it and I think generating some education through GOOGLE is a GREAT idea!

Donna

YREKADC 04/28/2011

MEGAN, NICE BLOG, I AM NOT SURE WHAT A BLOG IS, BUT IT LOOKED PROFESSIONAL. THANK YOU FOR SPEAKING ON THE BEHALF OF ALL US HH MONKEYS AND HUMANS!! I WILL HAVE AN EYE ON IT, I DROPPED THE OTHER ONE!!
YOU GO GIRL/LADY/FEMALE OF THE OPPOSITE SEX!

deleted_user 04/28/2011

Megan, I took zzzdj's lead and posted it to my fb page too! Maybe, just maybe we can get something started here. How about the rest of you here in the group???? Can more of us post it to our FB pages????? YREKA.....did you ever find the eye you dropped? When Clint Eastwood got married back in 1996 I think, The wedding was held at Steve Wynn's (your sister will know who he is) Ca. home. Steve was holding the ring for Clint and subsequently dropped it. Luckily Clint's son found it. Now Clint is going to be Steve's best man this weekend at the Wynn resort. He offered to "drop" the ring for Steve too! You gotta be careful what you drop.

deleted_user 04/29/2011

Hi Megan. I would suggest a twitter account to go with the blog. Like this one https://twitter.com/#!/celticcurse

deleted_user 04/29/2011

Hey good idea, and you are correct this stuff needs to get out, info is always good to share!

As I have said before, we are really the first generation to deal with this DNA Snag!

Megan-Leigh-McDonald 04/29/2011

@Donna: thanks! I corrected the mistake on the .com/.org :)

@momonthemoon: I used to live in NY/NJ - loved it - can you tell us more of what you're doing with your group?

@diamond4life: that's a good idea - I'll keep you posted about that

deleted_user 04/29/2011

Good job lady! I am following your blog. Please do the same for mine.

www.mydogsteeth.com

I would also like to suggest another awesome HH blog:

ironandsunshine.blogspot.com

deleted_user 04/29/2011

I regularly blog on my phlebotomy treatments, HH diet, and living with HH. If you click my header "intent" on my blog you can read all about HH

xo

deleted_user 04/29/2011

Hi Meg~~ I was diagnosed with HH several years ago. Unfortunately, HH seems to be more prevalent in Canada and in Northern European countries. I cannot for the life of me understand why more is not known by doctors about this condition in the USA. I recently asked a doctor about it and all he asked was--"how do you spell that disease?" Can you imagine?? It certainly doesn't give one a warm fuzzy feeling for the medical profession. Take care
LilyC

deleted_user 05/04/2011

Hey guys, since my post was going to sound exactly like Meg, I will add my blog here as well. I write for therapy and also because I have felt alone for over 12 years, and I am happy to share my story with others so they don't have to feel that way.

http://theburnedhand.wordpress.com/

Join the Conversation