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WE HAVE UPDATED FOR MAY! Thanks, Although the original purpose of this website was to shed a little light on the rare genetic kidney/liver disease called Autosommal Recessive Polycystic Kidney Disease/Congenital Hepatic Fibrosis, or ARPKD/CHF, for short, we now have something new to be concerned about. It is yet another "rare" genetic disease, basically known as Cowdens Syndrome, or BRRS (Bannayan-Riley-Ruvalcaba Syndrome...the childhood form of the disease). Apparently both diseases have recently been renamed to be known as the "PTEN Hamartoma Tumor Syndrome", but we tend to refer to it as "Cowdens Syndrome", as a universal term, be it accurate or not. Both diseases are potentially life threatening, yet most doctors have never heard of, or have very little knowledge of, either disease. It is becoming a learning process for all of us involved. With this being said, please read Cyann's story and then check the Updates section for the latest updates. They start with the most recent going back. On the lighter side, since ARPKD affects the whole family, it would be hard to separate it from other family things. So we are also making this a place where we can share pictures, old and new, and any updates regarding our family. By the way, in case anyone
is wondering...our daughter's name, "Cyann", is pronounced
('Sigh'-Ann), and is a derivation of Cyan, which is a shade of turquoise/light
blue. (You may come across it when you change the ink in the printer,
for instance.) My husband, Scott, who is a graphic artist/web designer,
came up with it, and I added the extra 'n'. A lot of people tend
to confuse it with "Cheyenne" or "See-Ann",
so it would seem that we have unfortunately cursed her with a name
that she will forever have to spell and pronounce for people! |
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