This is a nice article by Dr. Goodman of HDDrugWorks.org. It discusses why your doctor knows little (if any) about Huntington's disease. I thought it was very enlightening.

[hddrugworks.org]

Steve




Edited 1 time(s). Last edit at 01/14/2013 02:01PM by SteveI.

Thanks Steve. Interesting and I have seen this with physicians. My Internist keeps up with what's going on but he readily admits he knows little of Huntington's.
Mike

A very similar situation over here in Scotland, and the Scottish Huntington's Association are quick to remind us carers that we are the experts, and that we need to educate the medical staff.

Additionally, the SHA have regional Support Workers, and they provide training and will speak to a physician on our behalf, attend meetings etc. Here in the Highlands our rep even went into our kid's high school and provided some training for the teachers on how living with a Phd might affect them.



Edited 1 time(s). Last edit at 01/29/2013 11:38AM by Shrimp in a Kilt.

I have nothing further to add....but I LOVE that name Shrimp with a Kilt!!!

Welcome.

Thank you, Patty C

It refers to my English soccer team, Southend United (The Shrimpers) and the fact that I now live in Scotland.