Letter from Ali Guthy

Managing Editor of The SPECTRUM newsletter

Dear Friends,

 
My name is Ali Guthy and I was diagnosed with Neuromyelitis Optica (NMO) Spectrum Disease my freshman year of high school.  When I had first shown signs of the disease (although I wouldn’t so much call it a disease, but more of a lifestyle), I was fortunate enough to have parents who not only could financially provide for the most prestigious doctors to research my case, but also whose never-ending love and support has helped me surmount even the most difficult obstacles.

My mom especially has played a crucial role in becoming my comrade or “first in command” throughout this mini battle I’ve been facing. She sacrificed her career, her life and most of her hair (unfortunately the coloring lasts no more than a week now, until finally her naturally grey hairs start to seep through the artificial brown locks). Anyway, after a year of disbelief and utter ignorance of the seriousness of my condition, I finally became more open to discussing my new lifestyle. I was inspired by the work my mom had done in the short year I had been diagnosed and I began to feel compelled to do my part in aiding a noble and close-to-home cause.

The idea for the newsletter began during my 10^th grade community service assembly. All the speakers discussed charities, which don’t get me wrong all seemed great, but nothing really spoke to me. That’s when I began to wonder how my hapless circumstance could be somewhat beneficial. So that night I discussed some various options with my mom on how I could get more involved in what is really my charity. I began to think of all the things I would have wanted when I first got the diagnosis. I remember there was no information available. Absolutely none. We had to work from the ground up and I didn’t want anyone to go through the same thing I did and thus, the newsletter was born. It wasn’t until a couple weeks later when the team started to come together, that I was named their honorary “Managing Editor.” It was a position I wasn’t quite prepared for, but I think in the end was a position I needed to have.  I started thinking about topics that would not only be informative, but also fun and uplifting to both new and previously diagnosed NMO patients. I wanted these topics to show that yes, NMO is a rare disorder, but no, it does not have to stop you from living.

Since I’ve been diagnosed I have been MVP of my tennis league (not team, but league, which is much better), I’ve discovered a love for photography, I’ve been a journalist for my school paper (I will be focus editor next year, which is a considerable step forward) and I’ve been riding my horse every weekend on the side – you know, just for fun. All these things I had done before my diagnosis and I continue to do now. Of course, there are some days when I’ll come back from riding and there’ll be a nurse waiting in my room for a steroid infusion, but then later in the day I’ll happen to find myself strolling through the mall with one of my friends. Sure, having NMO – well quite frankly – it sucks, but there is hope. No one should have to sit on the sidelines of their tennis match or just watch someone else ride their horse because of some microscopic malfunction in their DNA. I refuse to be restricted or limited by anything, especially not myself and my own body.

My dreams have not changed and the chances of my success are still as strong as they’ve ever been. So to all of you who are facing what seems to be an insurmountable barrier, remember there is always hope, and that hope will never cease to exist until the battle is won and a cure is discovered. That is the mission of The Guthy-Jackson Charitable Foundation and it is now also my personal mission.  I know how it feels to be the one in the hospital bed. I know what it’s like to sit in five different doctors’ offices in one day. I know what it’s like to have a bunch of different people come up and probe you like some guinea pig on an operating table. And sure, it’s not fun, but now I know I’m not just suffering through it for me anymore. This whole foundation is not just about me anymore. It’s about each and every person whose lives have been affected by NMO. So now every time my mom tells me I have to go to the University of California, Los Angeles (UCLA) to draw some blood after school or I’m going to have to visit a doctor at the Mayo Clinic during spring break, I think about all the people I’m potentially going to help, all the lives that are not going to have to experience the same thing I did. I guess in the end, I’m sort of glad this all happened to me. At least I know I can handle anything this disease is going to dish out at me and I know that no matter what, I will always have people to love and comfort me the entire time. So I guess in the end, that’s why I wanted to start this whole newsletter. I thought that if everyone with NMO banned together, really thought about what we are fighting for, we could find a cure (and a lot faster too). Working together is the pathway to the cure and I’m confident that if we all come together as a community we will succeed. NMO, ha, those three letters will never bring me down again. Thanks for all the support.

Your Managing Editor,

Ali Guthy

Last updated 834 days ago by Chief Moderator