Just got my daughter checked last month and she is a carrier also. She is only 7yrs old but at least we know that we have to keep an eye on it. I was told i have 1 chromozone with 2 mutations and she has 1 chromozone with no mutations. What ever that means. Even my Family dr is not to sure what it means. I am still waiting to see a specialist for 6mths now.

I sent an email to my parents and my kids (2 of whom are adults) with links to easy to read sites on hemochromatosis.

Here is a sample of my hemochromatosis email to family members:

"Hello,

I just got the results of my blood test and it shows that I have the gene for hereditary hemochromatosis. The doctor said that my kids, siblings, and parents should be tested for it as well.

The way hereditary hemochromatosis is treated is by getting a series of regular phlebotomies. Phlebotomy (blood draw) is a procedure that removes blood from the body.Then I will see the doctor again to check my iron levels.

Talk to your doctors about getting your test for hereditary hemochromatosis."

My parents are getting tested and I will take my 2 younger children to the doctor for their tests. The 2 oldest girls don't think hemochromatosis is very serious and that it's something only "old people" have to worry about. One daughter thinks she's anemic so therefore she can't have hemochromatosis. Hopefully they will read the links I provided and change their minds!

Also, I gave a copy of my test results to my dad's doctor. He just had a mild stroke and I accompanied him to his appointment. He has trouble articulating information to the doctor so I made sure to let her know about my diagnosis and asked if he could get tested as well. She ordered the test for him that day. He is 71 and has had arrhythmia since he was 40ish and he is hypothyroid along with some other issues. I am suspicious that he may have hemochromatosis.

Here are a few helpful links that I included in my email to family members:

http://www.nhlbi.nih.gov/health/health-topics/topics/hemo/livingwith

http://www.genome.gov/10001214

http://www.cdc.gov/ncbddd/hemochromatosis/training/pdf/hemochromatosis_course.pdf

http://en.wikipedia.org/wiki/HFE_hereditary_haemochromatosis

Thanks for your comments, I hav become a bit evangelical about HH, and try to raise awareness when I can.

Have a good 2015.

Regards

Steve

Steve - I can relate to your "evangelism" regarding HH. I, too, have become very fervent about the topic as well.

My oldest daughter (26) seems to think HH isn't a big deal given that she has an extremely rare gene mutation that causes tumors to grow anywhere on her central nervous system for which she had extensive brain surgeries in Dec 2013. She has had life changing issues since the surgeries and has other tumors that need to be treated. So her rational is that HH is more of an inconvenience rather than life threatening when she compares it to her brain surgery.

Second daughter (22) thinks she is anemic and that means she couldn't have HH.

Third daughter (18) is willing to get tested and I will have my son (14) tested.

Hi all

Just a quick update.

I thought that I would post this as I find it almost unbelievable.

Following on from my HH diagnosis in Jan 2014 and subsequent treatment and then having my family checked and finding that my son is an at risk carrier and my daughter has HH and the fact that my wife was checked and diagnosed as a carrier.

We had advised my wife's sister to have the test for HH, She lives in Northamptonshire.
Well she went to her octor and explained about the family history with HH and asked to be tested for the HH gene, unbelievably her doctor said that he had never heard of HH and did not know what test to order!!!!
He is apparently going to investigate and get back to my sister in law.
I also wrote to the UK goverment, to both the PM and the health secretary regarding the amount of money that the health service could save on heart, liver,cancer and dementia care if they screened the population in their early teens.

I said that it could be a win win situation as they could use the blood from the required phlebotomies in our NHS service.
And they would cut down on the number of people needing expensive health care as many people would not get the diseases.

Guess what, only the health secretary responded and they said that they are not interested!!!!
I am still wating on the PM's office to respond.
Oh well I tried and will keep trying.

Regards

Steve

It is shocking that the health secretary did not welcome your letter.at the very least. I think the Haemochromatosis Society (UK) participate in awareness-raising so it might be worth checking what they are doing about this. I don't have time to do this at present as I am still fitting regular treatments in to an exceptionally busy working life. Maybe I could do something about this after easter if I can go onto a maintenance regime then.
Christine