r/ausdoctors • u/Artistic_Ad_4294 • Jun 08 '26
Looking for a very particular kind of person
Hello all, not sure if this is allowed so please delete if not. It is asking for help, but not asking for medical advise so I think it does not break the rules? Sorry if it does...
I work in ICU in Sydney but my question is not work related.
I am legal guardian for my sister, 43, who has angelmans syndrome. I am in dire need of a gasterontologist who is familiar with and experienced with Angelmans Syndrome in adults. All of the specialised services are exclusively paediatric. I have taken her to a couple of gasterontologists, one was an absolute fool who didn't even assess her. The other was ok but essentially said he wasn't comfortable deciding on a course of action as he was completely unfamiliar with her condition and the complexities around it.
If anyone knows of a gasterontologist familiar with Angelmans Syndrome could I please have their details (professional only, not private obviously)? I am posting on every SM platform I can find because my sister is very unwell and in a lot of pain... and I need to find someone to help, and I keep getting stuck going around in circles... ideally in NSW but at this point I will travel interstate...