1204. Community Spotlight - Ilona Williams

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.