My name is Darcy Marie. I enjoy the simple things, shopping, horseback riding, walking in the park. But today I’m going to share my story.
Author: Ataxia Support
Poland Syndrome Awareness and Me
My story with Poland Syndrome started the day after my son was born, when I noticed his fingers were joined together.
Linda’s South African Story
My name is Linda, I am 33 years old and I was born on May 23 1987, in the Park Lane Clinic Johannesburg South Africa, on my Gran’s birthday.
More Than What’s on the Surface
My name is Scott Armit, I’m 30 years old from Glasgow, Scotland. I was diagnosed with a genetic neurological disease called Friedreich’s Ataxia aged 23.
Lisa Antonelli Cole’s Long Journey to Diagnosis
I was diagnosed in December 2013, though I was misdiagnosed for several years prior. I feel very badly that misdiagnosis of ataxia is…
Emily’s 427 Mile Trike Ride with Ataxia
For the past six years, my summer vacation in the last week of July was taken by participating in this little ride called RAGBRAI …
Patient Power and Participation
A blog by Sondra Butterworth. Quality of life and social support: a mixed methods case study of adult living with rare genetic skin conditions.
Rare disease has no borders
My name is Mark Desa. I’m from Ontario, Canada – just outside of Toronto. I have ARCA1 (or Autosomal Recessive Cerebellar Ataxia type 1). This is my story.
The Lucky Side of Things
My name is Elise, I am 31 years old and was diagnosed with spastic ataxia in 2011, at age 23.
Journey to Diagnosis
My name is Darcy & this is my story “Life with Ataxia” my journey to diagnosis. I was born July 26th 1992 & I was considered a developmentally delay child. I was late to walk, talk & use motor skills.