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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Genetic Testing Moral Dilemma

mel.belle
mel.belle

My husband and I are currently going through IVF to have a child and have struggled for sometime with infertility. We just found out we are both carriers for Hemochromatosis and we have a 1 in 4 chance that our child will have the disease. I'm struggling to know if I should genetically test each embryo before implanting or take the risk. If we take the risk then I would genetically test the child as soon as I could and start habits in place at a very young age to manage the symptoms. I would love some thoughts from people who have the disease on your quality of life, and if your life would have been different if you would have known as an infant. Thank you for your thoughts.

cloudone
cloudone
Hi
It’s great that you were tested so now you can proactively take care of your child. If you find out right away then problems can be prevented. In my case no one knew anything. None of my doctors did any tests for it and it is a special test that is not part of a full blood work up. They only found out after Ilost my gallbladder and they looked at my liver and biopsyed it. You are far ahead. My daughter has one copy of the gene so she will be checked yearly for the special tests.
CuriousAbouttheScience
CuriousAbouttheScience
I highly recommend against testing the embryo! Hemochromatosis patients can live totally normal lives if the disease is diagnosed and treated. Don’t risk the life of your potential baby. She or he will be just fine living with HH, especially with you to get her or him started off right.
Cap6
Cap6
Seriously, I would test your baby and start out with healthy habits. I have both Celiac & Hemochromatois thanks to my mother. I am now 66 and and glad I'm here! If I had known from birth then I would have learned to adopt a healthy lifestyle from the start. That's my only regret. I now live a gluten free paleo life, am healthier, even with 2 genetic diseases, than I have ever been. Start your baby off healthy. Omit the processed foods. My rule is if there are more than 2 ingredients or it comes in a package I run. Your baby will thank you and live a long happy life!
orcasgal
orcasgal
as said by others, no big deal, can be lived with, so I would not test embryos. If it is a girl, she may well not experience any problems until menopause, as periods take care of ferritin build up! At least I had no symptoms until after menopause, and now get blood draws to treat the problem. Another thing on women, it would be good to have a female child tested before she has babies, as I had a low birth weight baby and it turns out there is some connection.