Wednesday, October 10, 2012

Wilson's Disease Forum

So last Sunday the 30th of September Kyle and I went to a Wilson's Disease Forum in San Diego, California. My dad and step mom as well as my mother-in-law and father-in-law were able to come along as well, which was awesome.
Here are the things that I learned:

  • I need to get a liver biopsy, which I knew I was about due for, the part that I didn't know is that if the results for my I think it was liver function came back under 35, then I am okay to stay on just zinc, but if they are over 35 I should start on Trientine again for a little bit.
  • Gluzin is an alternative for Galzin.
  • I am NOT crazy in thinking that my zinc tastes and smells really bad. Apparently high dosages of zinc can change your taste buds and olfactory glands, it also may be the cause of why I can't smell skunk.
  • And the big one is IF Kyle does not have one of the gene mutations for Wilson's Disease our children will have no chance of inheriting it. On the other hand if he does then there will 50% chance of them having it. The odds are 1 in 180 that he will not have it however, which is fairly good in my opinion =]
  • The  test is $1000 and has to be done by ARUP or the Mayo Clinic, which is a small price to pay to ensure that we don't pass this disease on.
  • However even if he doesn't have the gene there is still either 25% or 50% that or children will be carriers for it (I cannot remember which it was).
So we learned a lot and I would say that it was well worth going to =]

1 comment:

  1. I work at ARUP :) I think it's great that you and your family were able to attend this, Alysa! I was able to attend a Crohn's one a couple of years ago with Spence and I learned a lot!