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To Test or Not To test?

bamartin
0 Recommendations

My 7 year old 2nd cousin passed away yesterday due to complications from Wilson's Disease. To be honest, it's not a disease I am very familiar with, but I do sympathize with her father (my cousin). Losing a child is most parents' worst nightmare.

Consequently, I haven't been able to determine a reasonable risk factor for my children to see if I should have them tested. They would be her 3rd cousin. Am I just being overprotective here or is there a legit reason to have them tested---or should I just monitor them for symptoms?

Thanks for the help pointing me towards determining their risk factor.

Explore topics in this discussion:

Wilson disease

3 replies

McVeggie

hi bamartin,

it all depend on how old your children are. If they are still young you think that they might not be able to take the blood work. I would suggest you and your spouse/partner go check your DNA to see if you both are carrier of WD. If yes then its advise to get all your children tested. If only one partner is carrier then there is no need for your children to check it out. I have WD, my brother doesn't. Hope this help. maybe others on here can offer you a better solution.

Heron

The risk factor for 3rd cousins is not very high, but if you got the testing done you would not have to worry about it. You should also get tested yourself, since your chances are a bit higher than your children's and WD can affect people at any age, even if they had no symptoms for many years. I was diagnosed myself at age 53.

The WD Association website at www.wilsonsdisease.org has a lot of info including contact information for testing centers. Perhaps you could call one of them to consult.
Good luck with everything.

mom2six

I had never even heard of Wilson's Disease until 2001 when my 14 year old daughter was in acute liver failure. I had my other 3 children diagnosed at that time and my youngest son, age 2 then, was also diagnosed. My other 2 children are carriers. Don't let the doctor tell you that age 2 is too young! We have a wonderful liver specialist but he felt my youngest was too young to be tested. I insited and it paid off!

I really don't think you would have to be too concerned about the 3rd cousins. My sister in law had her 2 boys tested after my daughter was diagnosed and came up carriers.

I think if it would ease your mind, then you and your husband should go get tested. You both have to be carriers in order to have one of your children have it. Or make an appt with a genetic counselor.

Good luck and I'm very sorry to hear about your cousin!!

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