Transient neonatal diabetes

[hisjen84]

hi I was diagnosed back in march with a rare form of diabetes called transient neonatal diabetes mellitus. Despite searching the Internet and forum I can find very little information about it, more disappointingly I have yet to find anyone with this type it would be good to have someone to help/talk to about it

 

[Rodney from Canada]

hi I was diagnosed back in march with a rare form of diabetes called transient neonatal diabetes mellitus. Despite searching the Internet and forum I can find very little information about it, more disappointingly I have yet to find anyone with this type it would be good to have someone to help/talk to about it

Hello,
I just came across this post from a while back.
http://monogenicdiabetes.uchicago.edu/for-healthcare-professionals/neonatal-diabetes/

At uchicago they have a monogenetic diabetes registry.
http://monogenicdiabetes.uchicago.edu/

The experts there are very friendly. When I discovered I had MODY3 (the most common of the monogenetic forms of diabetes), I reached out by e-mail, had a phone call, got myself registered etc.

There is a relatively small number of folks with my form of diabetes, and then within that are various specific types of mutation that could occur as well as specific locations of the mutation type. I requested to be put in touch with anyone with the exact same mutation that runs in my family. The researchers were able to ask another family with the same mutation if they were open to that. When both parties agreed, they connected us by e-mail.

Anyway, it isn't easy to find and connect with those that share a rare form of diabetes. But perhaps this is one more avenue to try out.

Wishing you all the best,
R