Living with Acrodermatitis as an adult female

[Marie]

I discovered this group today after doing some Googling. 

It appears the group is inactive, but hopefully I can share my experiences for someone to read eventually.

I am a 27 year old female living in Maine. 2 weeks after my birth, the typical AE symptoms presented themselves and my parents panicked not knowing what was happening to their first child. As some of you may know, a couple who both have the recessive gene has a 1 in 4 chance of having a child with AE. With my luck, I was the special chosen one. My parents could have had 3 more kids and none of them would have AE. My younger sister does not have AE. Eventually my parents brought me to good doctors who were smart enough to test levels and discovered absolutely no zinc levels. Since then I have been given Zinc Sulfate and living as normally as I could (but now am taking Zinc Glucoante because it is easier on the stomach). I have spent the past 27 years battling AE, I could write you a book about my experience. The hardest was when I was a child (11-15) because of all the growth and changes my body went under, the zinc was up and down.

I have seen so many doctors hoping for something more than just the same answer "keep taking zinc and you'll be fine". I worry that this AE will kill me one day because it is rare, there is little research on it, and prior to its discovery in the early 1900's people were dying from it. In fact, until 1972 when its official name and diagnosis went on record, AE was taking lives. This is all research I found by the way.

I have been taking as much as I can get into my body on a daily basis. I know some of you are parents so aren't able to know this ...zinc is extremely hard on the stomach. It feels like metal in your stomach. It is nausiating and if the proper amount of food is not taken with the tablet the zinc will not stay down and the person will vomit the pill back up. I live every day planning how to eat enough to take my pills. I have gained a lot of weight (approx. 30 lb. overweight) from having to eat significant amounts of foods to keep zinc down. For those with children, know that if they gain weight they have to increase their zinc, and it is not possible to drink alcohol because alcohol inhibits zinc uptake. 

I am looking for other ways to get zinc into my body - liquid form is not available other than online and that I need to find as well.

I could go on and on forever so if you have any questions for me or my experiences feel free to ask and of course share yours.

Something needs to be done about the lack of research on AE, and lack of knowledge in doctors on this. I feel like I am on my own and have to figure things out on my own. My parents kept me on the zinc while I was a child. I am now a married adult woman who has to make sure she survives this. This disease is evil. It's uncuttable, its nasty, it hurts, its mean, and all I can do is keep my levels up to temporarily fix it. I'm afraid to have a child because I don't want to die as AE is severely complicated when pregnant, and I don't want to find out what will happen to me if I become pregnant with the AE. And God forbid I have a child who has AE. 

Good luck to everyone. Know that you are not alone with AE, we have to come together eventually to support one another.

Peace,

-Marie

[April]

Thank you for sharing your story.  You are correct, zinc is very hard on the tummy since it's a metal.  Zinc gluconate is a little better, but have you tried zinc methionein?  It's more easily absorbed and if you combine your zinc with B6 it will work even better.  If you are taking calcium or drinking a lot of milk, it's best to take your zinc at a different time because calcium can inhibit it's absorption.  Also, as I'm sure you already know, oysters are a super source of natural zinc if you like that sort of thing.  :)  I hope this info can help you a little and I'm sure your story will be very beneficial to others.  I think this group is a great source of info for those doing research on AE for themselves or their children.  Thanks again!
-April

[Annika Thomsen]

Hello, 

Thanks for charing your experiences! 

There' s a group on facebook with parents of children with AE.

Annika

Annika Thomsen

Westerfeldweg 5

25704 Wolmersdorf

04832-600845

thomsen-w...@web.de

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