When Sydni was 7 or 8 years old she started exhibiting symptoms of instability and difficulty walking. At 10 she was diagnosed with Friedreich’s ataxia (FA), a rare inherited neurodegenerative disease. Both of her parents were unknowing carriers of the disease, giving birth to two children with FA. Over time FA causes progressive loss of feeling and mobility. Although research into this disease is ongoing, there is currently no cure.
In episode 44 of the Major Pain podcast Sydni discusses living with Friedreich’s ataxia. Now 21 years old, Sydni is the CEO of her own social media company and was recently engaged to her boyfriend. Although her disease has progressed over time it has not stopped her from living her life and pursuing her dreams. Growing up with health problems caused her to become more empathetic towards others in need, giving her a deeper appreciation for the positive things in her life. She shares her hope for the future of FA research, having participated in several clinical trials. Although the therapies she trialed did not prove effective, she has hope that breakthroughs will be made to improve the lives of FA patients in the future.
RESEARCH OPPORTUNITIES: https://rarepatientvoice.com/MajorPainPodcast/