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Finding hope in difficult times

Michelle’s making the best of life with NMOSD

Published 13 August 2020

Michelle’s diagnosis with neuromyelitis optica spectrum disorder (NMOSD) initially left her shocked and devastated, but now she refuses to let it prevent her from living her life to the fullest and encourages others to do the same.

On her birthday, Michelle was home alone when she got a call from her doctor with life-changing news. She was told that she had NMOSD, despite having been on medication for multiple sclerosis (MS) following an incorrect diagnosis several years earlier. The rarity of NMOSD and fear of the unknown left Michelle devastated, and feeling helpless and alone. 

Michelle’s doctor advised that they needed to treat NMOSD differently to MS, but at the time of her correct diagnosis there were no approved treatments for NMOSD. She was overwhelmed with information that lacked substance and provided her little comfort. 

Michelle got in touch with the Guthy Jackson Charitable Foundation where she found a wealth of reliable clinical information and for the first time was able to connect with other people who she could talk to about her diagnosis, symptoms and living with the condition. Sharing the burden of her disease with others was transformative and she began to form lasting friendships. From then on, she resolved to do all that she could to support others with the condition.


 

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Don't give up living because you've been given a rare, serious diagnosis. Make the most of what time you have here and keep living. There's a lot of help to be had. Keep moving forward.”
Michelle living with NMOSD

Michelle is now an NMOSD advocate and tries to instil hope in others with the condition not to give up on their ambitions. She wants to let the newly diagnosed know that they have a bright future and that the disease is only as limiting as they allow it to be. 

Michelle urges other people with NMOSD to think of practical steps they can take to achieve their goals, and not to be discouraged if there are setbacks along the way. Above all, Michelle believes that it’s important for people to remember that just because they may not be able to do something in the present, it doesn’t mean that in the future they won’t be able to.

Michelle does not let NMOSD define who she is and lives every day grateful for all that she has. She is eager to continually inspire others to not let NMOSD get in the way of them living happy, active and fulfilled lives.

I really believe that each patient does need defined that thing that brings them joy, that thing that brings them peace and happiness. That healthy thing, whatever that healthy thing may be, whether it is an activity, a sport, a game, a hobby, whatever that is that they can use.”
Michelle living with NMOSD

Tags: People, Science, Culture, Innovation, Society, Patients