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.
Here's another one. What about my kids who are most definitely hetero for C282Y an possibly have both the C282Y and H63D? How cautious do I need to be with them when at the beach? They like to run in and out of the water. They do have beach shoes but what if they have a cut on their leg or finger, etc?
deleted_user
Has their father been tested? I am homo for C282y so my daughter is a carrier. We just got my husband's tests results back yesterday and he is negative for C282Y and H63D. So I am leaving it at that and not getting her testing because we know she is a carrier. If your children are just carriers the risk of walking on the beach is slim to non.
jbelar
My husband is hetero for H63D.
jbelar
And I know we talk about wearing water shoes but what if there is a cut on the leg or hand, etc. Same threat right?
deleted_user
I grew up on the beach my entire life .Everytime I had cuts I would stay in the water longer ,when I was growing up salt water was the cure all back in a day .I am over 50 now and just diagnosed in 2009 with both copies and a ferritin count over 2500 so my thoughts are to just have fun and just beware of eating raw seafood ,I also ate alot of clams and raw shrimp but that was a long time ago . I still own the beach property and travel there several times a year and love my barefoot walks on the beach and in the water so do not fear the best pleasures in life . Queenie
deleted_user
I posted about vibrio vulificus on other post. From my understanding from the doctor and what I have read as long as your hemochromotosis ferritin levels are low (I guess 50 or under) you should be fine. I read a study somewhere that said the same thing. Though still be aware that vibrio is very dangerous regardless if you don't have HH. As soon as my levels are down I plan on going to the beach all the time and enjoy life!!!!
deleted_user
I haven't heard of any particular risk from cuts. Could you explain this and/or provide a link to research? Thanks.
jbelar
I don't personally have a link to share but I am sure you can find it online if you look up hemochromatosis and vibrio vulificus. Also, there is another post on this forum discussing this.
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