ANOTHER BAD STORM HERE ON POMC ISLAND



I sent an email to the Drs. in Montreal Canada that did a study on Adrenal Insufficiency and they found 2 patients with POMC,
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Hello,
Let me thank you in advance for you time and assistance. This is something that is exceedingly close to my heart.
Allow me to introduce myself:
My name is Karen Snizek I live in Daytona Beach, Florida USA with my 4 year old son Nathaniel. He has POMC a heterozygous mutation  R236G.
We got his Dx in May 2010 while under the care of Val Sheffield, University of Iowa Children's Hospital.
We are currently under the care of Jennifer Miller at Shands University of Florida, Gainsville.

As far as I have been able to find there are so very few of us dealing with POMC and I cannot find any others in the USA.
I have sent and received e-mails from Dr.Heiko Krude in Gremany and Dr Farooqui in England to no avail.
I am desperate to find others to learn from each other and be comforted. PLEASE HELP ME.

PLEASE SHARE MY INFORMATION WITH YOUR PATIENTS FAMILIES. PLEASE LET THEM KNOW I WANT CONTACT WITH THEM

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THE REPLY
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Dear Madam, We thank you for your email. We applaud your efforts to create a forum for parents of children suffering from POMC. However, we are unable to follow up on your request to put our patient's parents in contact with you as per hospital policies. We thank you for your understanding and regret not being able to assist you further in your endeavours.
Regards
Dr. Johnny Deladoey


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I AM CRUSHED.
I JUST WANT TO CURL UP, TO QUIT
THIS JUST HURTS! TO!! MUCH!!!

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