The test

Okay, I'm going to do it. I've got to know, so I've got to go. IP (I'm going to call it that from now on since typing Incontinentia Pigmenti is getting a bit tiresome) is such a rare disease that there are only 3 centres in the world that test for it! I found them through the Incontinentia Pigmenti International Foundation, which I found through Google. Only one of those 3 is in the U.S., where I am, so I'll do the testing through there. If you're curious, the others are in the U.K. and Italy.

Luckily I don't have to physically go to the centre myself, which would be quite inconvenient since I live in Seattle and the centre is in Texas, I just have to send my blood sample there. Any doctor can take the sample. So, after contacting the centre and getting the paperwork, I went to my ob/gyn and they sent me to their lab for the extraction (ewww...).

I hate having blood drawn. I'm okay with shots, something going in, but I really don't like them taking things out... One of my friends who's pregnant though has warned me that you have to give LOTS of blood samples once I become pregnant... not the part of pregnancy I'm most looking forward to. I didn't look. When I asked the nurse, "It's not very much blood, right?" She said, "Well,..." I quickly interrupted her, "Just tell me it's not please!" Oh great. I still don't know how much they took out... but I survived in any case. :)

My doctor's lab took care of the actually sending and everything of the sample to the centre in Texas. The test cost about $500 and takes 4-6 weeks, but luckily our insurance covered it :) . Now I just have to wait... and I should do some more research and figure out if there's anything I can do if it turns out positive, which please please I hope it won't.