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.
The conference is only 2 days away! I'm flying out with my mom at 11 tomorrow! Words can't describe how excited I am! i will post everything i learned as soon as i can after!
To the others that are going: If you see me, feel free to come say hi! you just might have to remind me of your username haha I would love to meet you guys in person.
I also wanted to thank everyone for making me feel like i'm NOT alone. I've never met anyone who has HH except for on here, and I think that's why I am so excited for this conference. So I can meet others in person and not feel the slightest bit alone anymore.
THANK YOU!
Emma
To the others that are going: If you see me, feel free to come say hi! you just might have to remind me of your username haha I would love to meet you guys in person.
I also wanted to thank everyone for making me feel like i'm NOT alone. I've never met anyone who has HH except for on here, and I think that's why I am so excited for this conference. So I can meet others in person and not feel the slightest bit alone anymore.
THANK YOU!
Emma
My husband is in Charlotte, going to the conference because I'm too ill to attend myself. He drove down from Upstate NY and had a hell of a time finding where he should be. His GPS device DIED just as he got to his hotel! (Amazing how reliant we become upon technology so quickly and how we forget to do things the "normal" way when the device dies.)
Anywhoos - just some odd bits since the actual sessions don't begin until tomorrow...
1) Altho HHC is the most common (potentially) deadly condition, there are very, very few doctors and/or medical centers who actually know about the condition or know how to CORRECTLY treat it. (The number of docs at the conference bear this out.)
2) It is not unusual for family members (including spouses or significant others) to be incredibly intolerant and unsupportive of those of us who have HHC. (My sisters and brother won't speak to me anymore and don't "believe" in HHC.) One attendee's family has basically cut all ties with him even though his brothers are beginning to show signs of heart and liver damage.
3) The Iron Institute staff are INCREDIBLY helpful. My husband has a one-on-one appointment with one of the staff tomorrow to go over my numbers and to try to find a good doctor for me.
4) Apparently it is quite easy to be over-bled and become "avid". (I'm going to have to look that up.) The HFE panics if you're not being bled correctly and goes into overdrive to hang onto the iron. This will not show up in your ferritin numbers but it will show up in your TSAT (saturation) numbers. I may have fallen into that group and may be the reason why I am not getting better but have gotten worse.
I'm sooooo excited to get info from the horses' mouths (so to speak) and I'll give everyone an update late tomorrow night after I've heard back from my husband. He is going to try to keep tweeting during the conference. His Tweet address is @celticcurse
If any of you wish to contact me directly with questions, send me an email and I'll try to get my husband your questions as soon as possible. (Not promising I'll get you answers, tho, sorry!) My address is cheycobb at gmail dot com.
Hugs to all and goodnight,
Chey
He has a smart phone and will be checking his email while at the various events.
Chey, your hubby's doing a fantastic job - I've just been reading his FB page here http://www.facebook.com/home.php#!/Hemochromatosis which has (currently) 529 followers/members/whatever they're called, and it incredibly informative.
* Dr. Joanne Jordan: If you get arthritis CHECK for hemochromatosis, it may not be osteoarthritis. Big area of under-mis-diagnosis.
* Fatty diet + alcohol + C282Y = high risk of liver cancer, even if iron and ferritin readings normal.
* Porphyria cutanea tarda HFE gene mutations = major risk factor. Remits with iron depletion. (I've read that a lot of people with HH also have Porphyria.)
I'll add more info as I receive it from the conference.
Chey
High trans-ferritin saturation in MEN = 4X greater colon cancer risk, 2.5X lung cancer (as men usually have higher iron levels when diagnosed because they don't have periods).
Doctors say more studies unlikely because there is no way for medical companies to make any money on phlebotomies.
(As I think back on the men in my family, there has been a lot of cancer, including my father, paternal grandfather, maternal grandfather, many uncles, and cousins. Unfortunately, my family does not "believe" in HH and no one will be tested altho I am C282Y x 2)
the reference to men and cancer with hh. is that based on individuals who do not get de-ironed. if you get your levels back to normal, i wonder if your at as great of a risk