Australia’s population is very small, about 23 million people, so the annual pool of TM diagnosis is a tiny number. It would be my wish that a gold standard for treatment be applied worldwide and that we’d be willing learn from ‘bigger’ countries, with more TM patients, and therefore more experience. It would be a dream for us Aussies, to raise enough funds to send an Australian neurology student to do an internship with Dr. Greenberg and have better collaboration between all the countries. We also plan to try to help raise awareness countrywide in ER wards, so if a person presents with TM, it’s recognized by a health worker and steroids are given quickly.
We are so grateful for SRNA, CCK, all the compassionate specialists who give up their precious time to be with the kids and families who support each other to get answers. We came away from SRNA annual quality of life family camp in Scottsville, KY camp with more questions regarding Chelsey’s health. The USA specialists raised the possibility of a spinal fistula, and recommended further investigation and the Australian specialists are disagreeing. We are still seeking a second opinion in Australia.
Gillian and Iain Bennett