I’ve made some updates on my pages uptop.
I did an Internet search a few days ago on “Cowden’s Syndrome” and found a new link with some info. from Science Daily. You’ll find it updated on the page but also the link is here.
Wouldn’t it be nice if someday my doctors could inform me of this information instead of ME having to search and find it myself?
UGH.
Rare diseases blow.


Comments on: "Updates" (1)
Well it’s just frustrating to me! I only credit the rare diseases you and I both have for the sadness. I wish there WERE more rare disease doctors!
Wow! I was “meh” on the geneticist I saw. She told me NOTHING I didn’t already know about CS & she had zero to tell me about LDD. Are you hoping to help get an official diagnosis (finally?)
Best of luck! Keep me updated ok?