POMC Island...alone
I have kept this news close to me because it hurts but I have yet to fully to process it...... I now want to share with you all some not so good news. As many of our fans themselves deal with a RARE of their own they may be familiar with the group "Unique" out of the UK. it is a great group and very informative. They have families from all over the globe register their RARE chromosomes and it's a great way to find other families that share the same issues. (I am not a spokesperson for them...) That being said, as was suggested quite a few times I too send in our info, in the hopes that we may finally connect with SOMEONE. ANYONE. that has POMC. they ask for the basic info which I sent, as well as a picture of the Goober-fish. this is the first e-mail I got back: Dear Karen Many thanks for your email and telling me about Nathaniel – including the gorgeous photo! If at all possible, would you be able to send a copy of his lab report? Or copy ou...