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.

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Strype 03/24/2010

Yea I know it might seem a bit barbaric, but his Pediatrician recommended it. In a week and a half we will travel to Vanderbilt. There he will have some kind of full genetic evaluation.

I hate to do it to my little man, but if anything is potentially wrong I would like to know now. I feel almost responsible that he has to go through this. :(

deleted_user 03/24/2010

I dont understand a lot of the political mess but what I have heard about some insurance companys not covering pre-existing conditions could play a part in your sons future care if diagnosed now before this new health care mess kicks in ,you might want to ask around ,dont know what your situation is at the moment with health care but I do know of people that were advised not to have thier children genetic DNA diagnosed on paper just for the fact of thier medical insurance would not cover them because it would be concidered pre-existing , this is all just a thought ,good luck ,Queenie

deleted_user 03/25/2010

I will be getting my teenage children tested as well in the next month. the last few months my son has been having stomach issues, leg pain and severe fatigue he is 17 :(

deleted_user 03/25/2010

I'm all for genetic testing, just as an FYI to my knowledge... but for no other reason. Put it this way: if he has 2 genes, get should have ferritin tests done every year or two. If he is a carrier, these message boards have proven that carriers DO also load, maybe slower then others, but they do. So, a carrier still needs to have ferritin testing done. And, since only 3 of the ??? genes have been found, And again, these boards are proving that many have HH without having any of the 3 genes... Get my point? Why can't we make a mandate that right along with a CBC, or any other regular yearly test, they also do a simple ferritin panel. There are cases that kids have iron loading HH, and there are cases where kids have died from heart damage directly associated with iron load. So, why not do a simple iron test? I've done both my boys for 4 yrs now, they are 15 and 12 now. Older son had 80%sat 2 yrs ago, ferritin was low. He's cut out cereal, Oj, etc. Had the genetic test done, he's positive. My 12 yr old had high %, and above average ferritin thats just hanging below the numbers. He's yet to be genetically tested, because I do not want the doctor to back off of his testing if the genetic test comes back negative.

deleted_user 03/29/2010

Good thinking. My son changed doctors and was tested straight away. My daughter is having labs in May when I go in.

Good idea to do it now, while the good doctors are still practicing.

deleted_user 03/30/2010

It's a good idea to get him tested now, so that you can be better aware in the future.

I would also agree with getting his iron and ferritin checked. I wish mine would have been checked when I was younger.

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