Living with neuromyelitis optica spectrum disorder: Advice from a working mother
Published 06 September 2019
Ana was diagnosed with neuromyelitis optica spectrum disorder (NMOSD) four years ago.With unconditional support of her husband, she has learnt to understand her condition and remain positive for what the future holds.
She is a 44-year-old mother who works at the Universidad Carlos III de Madrid as a teacher and researcher in computer science. She lives in Madrid, Spain with her husband and three children; Laura, Fernando and Alicia.
She shares her story here.
NMOSD is often misdiagnosed as multiple sclerosis. This is due to overlapping features of the two disorders, including a higher prevalence in women, similar symptoms and the fact that both are relapse-based conditions. An NMOSD diagnosis can therefore be hard to identify. In Ana’s case, problems with her vision in her left eye prompted her to visit her doctor who referred her to a variety of specialists. After a two-year process of ruling out other conditions, Ana was diagnosed with NMOSD.
As a teacher and researcher in computer science, with a specialism in disabilities, Ana is naturally curious and keen to understand complex processes. This remained the case for her diagnosis – Ana didn’t stop asking questions and gathering information to learn more about what was happening to her body.
At times, particularly when she is having a relapse, Ana needs to rest in bed for long periods of time. Despite facing the multiple challenges that are associated with living with NMOSD, Ana highlights the importance of thinking positively, looking after your body and remaining proactive.
At the beginning, it’s like a big shock, and you will try to deny everything. But little by little, the first person who is going to understand your disease is yourself.”
In addition, Ana found information from visiting an MS patient support group in Madrid extremely useful. With this information Ana was able to help herself and her family navigate their way through the NMOSD journey. Ana’s constant search for answers enabled her to understand her symptoms and their impact better. By listening to her body, she adapts her life to her condition.
But above all made her realise what really matters to her…
What I really want to do in the future is to enjoy every second of my life. And if I can do it with my family and friends as much as possible, that’s even better… My biggest hobby in my life is to meet with my family and friends for any plan. That’s perfect for me.”