Rare Diseases Conference 2018

I was fortunate enough to attend RareX 2018 on a scholarship from Rare Diseases SA! It was a four day conference, with the speakers ranging from doctors and representatives from the Department of Health, to parents of children with rare diseases.

My cousin Mia also attended... she suffers from Guillain-Barré syndrome (spot the other curly-haired girl!). Apart from being able to catch up with her again, I met some AMAZING fellow rare disease warriors. Networking and meeting these guys were the best part of the conference... (and the FOOD!). I thoroughly enjoyed myself. It was quite eye opening how common CF actually is, compared to most of the other rare diseases. And how lucky we as CF patients are to have a consensus document available regarding treatment. AND that apart from the new drugs on the market like Orkambi, our treatments are fairly easily available. (YES, it's a bit harder if you don't have medical aid, BUT some other patients need meds imported from overseas every month in order to stay alive. Some of these meds can ONLY be administered intravenously, so they are on a drip FOREVER). Also, other CF patients might not agree with me, but we are lucky to have the transplant option available to us when you reach end-stage CF. For some their disease is degenerative but with no "escape hatch" at the end.

 

As fate would have it, I also met Corne, who donated my Rare Bear to me a few months ago! Corne suffers from Ehlers-Danlos syndrome. She's had over 35 surgeries as a result of the condition (or side effects of the medication). Again... perspective!!! If YOU would like to donate a rare bear to someone (please do!), follow the link here.

The Saturday and Sunday afternoon were "workshop style" sessions, where discussions were had on practical ways to solve the problems that patients/caregivers/others involved in rare diseases face. Well done Rare Diseases SA on a fantastic and well organised conference!