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Alyson’s Story – Silver Lining’s Playbook to NMO

Posted by: The Sumaira Foundation in NMO, Patient, Voices of NMO

With a vulnerable yet advocational heart, I would love to re-introduce myself to the NMO community! My name is Alyson Tignor (née Pugh) and I am so much more than my name. I am a daughter, sister, wife, mother, advocate, lover, and celebrator of life! My testimonial – All That Glitters Isn’t Gold -was TSF’s very first Voices of NMO story, published in 2014 (you can read it HERE) and I am SO proud to share an update nearly a decade later…

When I was diagnosed with NMO (almost 10 years ago!), it was a blessing. I had dealt with numerous years of misdiagnosis and hospitalization that led to roadblock after roadblock. It was almost as doctors did not know what to do with me so, they gave me the “worst case scenario” of my future and that was that. Along with a heavy dose of oral chemotherapy and steroids, I was sent home with the thought that I had MS and within 24 hours, I was paralyzed from the waist down. My mom was told by my physicians this would be my life moving forward but she didn’t accept that for a second. Words will never express how grateful I am that my mom made sure no one shared this with me in order for me to keep my “mind over matter” outlook! After a week’s time in the hospital, I went into a physical rehabilitation facility knowing I would walk again – there was no other option for me.

After relapsing in 2016, I was officially (and finally) diagnosed with NMO. It was the best thing that ever happened to me.

Yes, I had spent years on treatments that I shouldn’t have been on and had to endure learning how to walk again, but I finally had a diagnosis which meant getting on the correct treatment for me.  

Fast forward through countless infusions, hospitalizations, physical therapy, and much more, I am happy to share that I have been able to get married, have the most beautiful daughter, and live my dream thanks to impactful medical movements by the NMO community. I am able to live my life with an invisible disease that the majority of people know and oftentimes, my story feels like it is someone else’s and not my own. 

Since being diagnosed with NMO, my biggest complaint is dealing with recurrent pneumonia (a side effect of my current treatment, Soliris). While Soliris has worked wonders for me in the beginning (zero infection for a year!) for NMO treatment, I have not been able to shake pneumonia off for over a year at this point. I am hopeful by working closely with my team of expert doctors, that we can find another treatment soon to avoid chronic illness and infection. 

All of this said, I am so thankful to have my wonderful, supportive family and to be a part of the NMO community – especially at The Sumaira Foundation! It is a blessing to be where I am toda, and I do not take this life for gratitude.

My biggest advice for anyone newly diagnosed with NMO is to first question your diagnosis and to allow yourself to absorb your diagnosis for as long as you need to! Also, make sure you keep an incredibly encouraging group of people in your corner who can advocate on your behalf when you cannot advocate for yourself. 

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