Adrenal Insufficiency Community
Alone on an Island
About This Community:

This patient support community is for discussions relating to Adrenal Insufficiency.

Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

Alone on an Island

I just found a like to a study done in Montreal Canada that involved 2 patients with Adrenal Insufficiency that led the doctors to discover the patients had POMC. This VERY rare genetic condition has less than 50 in the world. as far as I know my son Nathaniel is the only one in the USA and I am trying to follow any lead I can to connect with other families. I sent an email to the University of Montreal and they are unable to help me. I sent an email to a doctor in Germany and he told me that he also has 2 patients with POMC, but is unable to help me further.......I AM ALONE ON POMC ISLAND. my heart is broken and I don't know what else to do. someone reccomended that I post in groups like this in search of these familys.....I NEED contact, please share my story. Can you all help? www.facebook.com/POMCmomma
657231 tn?1453836403
I suggest that you contact the Magic Foundation (use a search engine) as they help support rare endocrine disorders for children and they may have a network that can either help you find other children with the same or similar disorders. It is a suggestion. They also have an annual meeting where kids get together which is nice. That could be some face to face contact with others going through similar issues.

I am assuming since this is a form of AI, you could also try the CARES Foundation as well. They cover CAH - congenital adrenal hyperplasia.

I tried to look up POMC but alas, kept coming up with an organization, so it was not much help.

Due to privacy laws, I rather doubt the doctors are allowed to disclose names of patients. You would have to find a forum or board where people are posting to get in touch with others.
Blank
Post a Comment
To
Recent Activity
168348 tn?1379360675
Blank
ChitChatNine is having fun! Comment
Jun 29
5931836 tn?1466963790
Blank
ridey777 added the Heart Rhythm Tracker
Jun 26
5931836 tn?1466963790
Blank
ridey777 added the Anxiety/Panic Tracker
Jun 26
Adrenal Insufficiency Community Resources
RSS Expert Activity
233488 tn?1310696703
Blank
Marathon Running Done Over Many Yea...
05/15 by John C Hagan III, MD, FACS, FAAOBlank
233488 tn?1310696703
Blank
New Article on Multifocal IOL vs &q...
05/15 by John C Hagan III, MD, FACS, FAAOBlank
748543 tn?1463449675
Blank
TMJ/TMJ The Connection Between Teet...
01/15 by Hamidreza Nassery , DMD, FICOI, FAGD, FICCMOBlank