Mike1126 - I'l check again but I think it depends on how soon you were diagnosed, what your levels got up to before the diagnosis, and the amount of damage already done prior to phlebotomies and getting your levels down. Once the damage is done, it can't be reversed. Since I'm not an MD, don't quote me until I check my facts again.

Conference over. Concensus about the level of expertise amongst doctors treating hemochromatosis:

Too many doctors think HHC is as simple as ABC:
A) We found the condition (pat on back)
B) We prescribed phlebotomies to control iron levels (did the right thing, another pat)
C) Patient treated, end of story (nothing more to worry about)

Sadly, doctors are not considering the damage already done, don't test for that damage, and don't think things will get any worse.

From a doctor at the conference:
- Now that companies can "patent" genes, research for HH has become very expensive. (Anyone who wants to do tests with the HH genes has to pay licensing fees to the companies who have claimed ownership of these genes.) Who has the $$$ to pay these greedy jerks?

In my opinion, this is immoral but the Supreme Court upheld the rights of companies to "own" genes.

Chey... Thanks for the updates!!!

Looks like the FDA approved blood donations from (most) HH patients in 2007!

http://www.communitybloodservices.org/os_ds_hhemochromatosis.php

I learned so much information its gonna take me a few days for a good post, gotta let my brain not be mush anymore haha
I did learn that i'm in the 1% that have the H63D and S65C. Does anyone else have this mutation? I can't find much info on it since its pretty rare. The head last of the conference was really excited to meet me and said she would be emailing me bunches of questions haha

Sorry new updates today. My husband is recovering from the weekend and compiling his notes. Currently we are looking for celebrities with HH so we can ask them to help promote broader testing.

Chevy thank you for bringing up the celebrity with HH subject ,I have often thought about it myself ,I know for a fact there has to be so many of them right now going mis-diagnosed . So often cirrohsis and heart related problems are passed off as family history ,my arguments to my doctors now are over the high blood pressure I have had since my early 20s that is almost normal for the first time in my entire life since I have been de-ironed ,they have been on me to continue my meds but finally I have taken it upon myself to wein off of them ,I am now down to one half a pill every other day ,so far its been keeping my pressure normal .I tell my docs after the fact now just to prove to them it has been hh related my whole life . Anybody in the group have any attention getting links to any celebrities ?

Mannnnnnn... great minds think alike (when they're working right). After I got home from the casino Fri night/Sat morning, I stayed up till 6am Googling celebrity hemochromatosis.. hemochromatosis celebrity list, etc.. I found one site that THINKS the Congressman who looks "tanned all the time" should be told to be tested b/c he denies tanning beds & has the "bronzed look". Another with a reference to an "Hereditary Hemochromatosis Celebrity Challenge"

and
http://blogcritics.org/scitech/article/even-celebrities-are-not-immune-to/

but I can't get a list like there is for "MS" or "diabetes"

Queenie, I also went every other day with my BP med but am now off
of it:)

That is a very interesting article, Zz - thanks! Never knew about McQueen, Steinbeck Jnr (Steinbwck Snr being one of my favourite writers) and Hemingway!

My blood pressure shot up as soon as I became perimenapausal. All my life it had been a steady 100/70 and I was shocked one day when the nurse told me how high it was. I hate taking pills and never took my blood pressure meds regularly. But now, since becoming de-ironed, my BP has come back down to 105/80. At least ONE thing in my health chart is OK!

I have Googled for years looking for celebrities with HH. I think the main problem is that it is so underdiagnosed, that even celebrities wouldn't know. Most of the celebrities we do know about were diagnosed post-mortem. Sad, but true for most of the population.

I propose a challenge... I would like to challenge everyone in the Senate and Congress to be tested for HH. They all have excellent health care programs and don't have to worry about being dropped by their provider. (And heaven help the provider if they DID drop the person.) I think this would be an excellent way to increase recognition of this problem.

Now I have to sit and have a think about how to go about accomplishing this. I must admit that I am very ill and sometimes it takes me days to even go online to do anything. I can go weeks without being able to get out of the house. So, anything I start will suffer from my occasional set backs. I'll have to set up a support team or something. Anyone else have any ideas? I'm open to all ideas and have an extremely thick skin, so have no fear of hurting my feelings or anything like that! I welcome anything y'all have to say.

Thanks!
Chey

Chey... about our health insurance...

http://www.irondisorders.org/genetics bottom portion of the page.

"Washington, Wed., May 21 2008 The President has signed into law the Genetic Information Nondiscrimination Act (GINA) that will protect Americans against discrimination based on their genetic information when it comes to health insurance and employment. The bill had passed the Senate unanimously and the House by a vote of 414 to 1. The long-awaited measure, which has been debated in Congress for 13 years, will pave the way for people to take full advantage of the promise of personalized medicine without fear of discrimination."

I Have had high blood pressure since my early 20's also. Never knew why. I have only had one phelb but after a few I will also wein myself off of this med.

KLmartin be sure to make your doctor aware of the relation of high blood pressure and HH ,in my situation the way my healthcare system works is I have to have a family doc who sent me to a hemotologest for my blood which then sent me to a pain clinic for my back ,they all have access to all my medical info in front of them but only treat the symptom in thier field ,my blood pressure dropping slowly was caught by me by accident ,in the beginning I thought a fast bp drop during a phelb treatment was because I took my meds a few hours before my appt but then I started skipping taking it all together on the days I had treatments and after about 5 more treatments my bloodpressure was always normal so I thought it was smooth sailing until my last phelb treatment and my bp dropped so bad that I passed out before I could exit as soon as I was done so then the light bulb finally kicked that it was now my bp meds causing my daily dizzyness and not the high bp anymore .All my doctors missed the slow but steady bp drops I was having once de-ironed .