“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!