“All my stories from the last eight months tell a story…my scars are a reminder when life and EDS tried to break me, but failed to. A story that says, ‘I survived’.”

So excited to share with you my the beginnings of my Patient Advocacy role at the annual ‘Chiari & Syringomyelia Foundation’ Night of Light Gala this past November in Washington D.C. I hope you can take a moment to watch/share my speech (click “Watch on Vimeo”)¬†to help better understand my personal medical journey¬†and realise that my story only represents just one of thousands of patients that reflects the true struggles, suffering and hardships living with an incurable and invisible genetic disease. I am so grateful to have survived these battles as I hope my strength and courage can inspire others to never give up, no matter how hard life can get!