The “Community Spotlight” edition of the “Ask the Expert” podcast series shares the stories of our community members. For this episode, Ilona Williams joined Lydia Dubose of SRNA to discuss her journey with neuromyelitis optica spectrum disorder (NMOSD). Ilona described her initial symptoms and the challenges she faced in receiving a correct diagnosis [00:01:22]. Despite experiencing skepticism and frustration, she persisted in seeking medical care and advocating for herself [00:02:38]. Eventually, after enduring significant health challenges, she was correctly diagnosed [00:12:07]. Despite ongoing symptoms and lifestyle adjustments, Ilona highlighted the importance of education, advocacy, and supportive communities in managing NMOSD [00:18:55] and mental health [00:37:56].

Ilona grew up as a military brat, spending most of her youth in Germany. She attended high school and community college in Maryland and has worked in Intellectual Property (IP) as a secretary and coordinator in two large international law firms over the last 25 yrs. Originally, she was diagnosed with transverse myelitis (TM) in 2006. Then, after additional issues and relapses, she was diagnosed with and treated for relapsing and remitting multiple sclerosis (MS). Finally, in 2018, Ilona was diagnosed with NMOSD AQP4+.

In 2018 and 2019, she also battled breast cancer and was treated with radiation, chemotherapy, double mastectomy surgery, and complete hysterectomy. After five months of being transferred in and out of different hospitals and two years of very intensive speech therapy and physical therapy, she lives independently and on her own. Her mother is a great advocate and caretaker. She keeps Ilona motivated, strong, with her spirits up, and looking forward to every day. She’s helped to motivate Ilona to become her own best advocate.