382. Rare Connections with Alex Brito

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Alex Brito: 

Having your voice heard and just really getting out there and connecting because you're not alone. There are others that are going through the journey.

Dr. Richard Shuster: 

Hello, and welcome to The Daily Helping with Dr. Richard Shuster, food for the brain, knowledge from the experts, tools to win at life. I'm your host, Dr. Richard. Whoever you are, wherever you're from, and whatever you do, this is the show that is going to help you become the best version of yourself. 

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Thanks for tuning into this episode of the Daily Helping Podcast. I'm your host, Dr. Richard today. And our guest is an inspiration. Her name is Alex Brito. And she is a beacon of resiliency in the rare disease community. One of the first hundred people in the universe diagnosed with neuromyelitis optica spectrum disorder. We're going to talk about what that means, the journey she went through and how she's helping other people with rare diseases.

So whether you've heard of this disease, whether you know somebody who's got a rare disease or you're perfectly healthy, you're going to want to stay tuned to the end and listen to this because Alex's story is amazing. I can't wait to share it with you and I'm grateful she's here. Alex, welcome to The Daily Helping. It is awesome to have you with us today. 

Alex Brito: 

Thank you for having me. I'm excited to be here. 

Dr. Richard Shuster: 

Well, so I intentionally left out quite a lot of your story and that was intentional because I think it's so important. Let's jump in the Alex Brito time machine and let's talk about this journey. So, tell us about your story and how you learned about the disease that you have. And then we're going to talk about what you're doing about it after the fact. But I want to set the table by talking about how we got here. 

Alex Brito: 

Okay. So again, my name is Alexandria. And my journey began when I was 12 years old, just a teenager in middle school, doing my teenage stuff. And I started with some eye pain in my right eye and I complained about it and felt like something was in there and mom said nope, nothing's in there. And then December 5th of ’97, I just remember that day closing my left eye and just not being able to see anything out of there. From there, of course, we went to go see a doctor and they thought initially diagnosed me with some optic neuritis, a virus, and thinking it will clear up, which it never did.

And then fast forward a few months later, I'm at softball practice and I just remember doing this amazing play. I was a catcher. And I thought maybe I pulled a muscle because I felt again, some -- not again, but something else going on. It was burning sensations down my arms, and they were shaking really bad. So I thought maybe I pulled a muscle but my neck hurt to bend as well. It didn't clear up, so I went to see my doctor and he referred me to a neurologist where the neurologist went ahead and did an MRI. And that was where my initial diagnosis was multiple sclerosis. 

So at that time, I really didn't know what was going on, but it was like, okay, this is -- you have this and you're going to go blind, but it didn't really process what was happening. It was just okay we'll just keep going but it didn't get better. I started a treatment there, set a treatment plan there with my neurologist, but things just seemed to progress. 

So for me, every three months I would get sick or have an attack, meaning something would happen to my body, whether it was more vision loss or paralysis. I couldn't use my arms or my legs temporarily. And again, I would be hospitalized and put in -- given some sort of treatment, get a little better, but it was never 100 percent. 

And so this happened every three months faithfully for about five years. And that was 2003. By then, I was paraplegic and by then I also was completely blind. I still did school. I still try to live the best I could. I had my family there to support me, but it wasn't getting better, and I didn't understand. 

But at that point, when I went to see my neurologist, and he saw how severe it was, I mean he really saw what was going on, the paralysis, being blind, and then also getting these phantom pains, burning pains throughout my body, he had fortunately come across an article of a study being done up in San Francisco in regards to this new disease that's being researched. 

So he asked my family and I to go there and see this neurologist and see if I can get some answers. I saw the doctor and he ran some tests, and I test positive for a QP4 gene. That is a gene that is common with NMOSD. You can test negative for it, but I tested positive for it and was re-diagnosed with neuromyelitis optica spectrum disorder and put into a new treatment plan. 

And by then, I would say within the year, I was walking again. I never regained my vision, but I was walking and haven't stopped since. And here I am today. I've been in remission up until 2020, where I had a small little fallback, which is okay. I fought through it, stayed strong, and I'm still walking, and just moving forward in life. 

Dr. Richard Shuster: 

When you finally got the diagnosis, how old were you?

Alex Brito: 

When I finally got the re-diagnosis? 

Dr. Richard Shuster:

Yes, the correct diagnosis. 

Alex Brito:

I was turning, I was 18. 

Dr. Richard Shuster: 

Okay. So you really went through this, it was 6 years. Pretty much all of adolescence, you went through this trying to figure out what's wrong with me? Why is this happening? I know, and I didn't read this, but it's in your bio that you refer to NMOSD as your bestie. Talk to us a little bit about that. 

Alex Brito: 

Yeah. So I know that may sound weird for some, but I've always had a very strong support system through my family. They've never showed pity on me and they've always just stay strong, miha, I mean daughter. And it was just to learn to accept it. I mean I really, I had a hard time during adolescence because I was your typical teenager in sports. I love to breakdance. I was always going out and just dancing and enjoying but being limited to it. 

So, it was, I guess at that time, where it's, well, it's here with me. It's -- she's here to stay. I refer to her as she. She's my bestie. And we just, I guess we got to work. We're going to have our good days. We're going to have our fallouts. But no matter what, we're going to be together to the end. So, I just had to, in my head, accept it as just a friend that's going to be here and there's going to be good and bad. But no matter what, we're going to get through it.

Dr. Richard Shuster: 

It's a really amazing way that you chose to reframe it. Did you come up with that kind of on your own? And --

Alex Brito: 

Yeah.

Dr. Richard Shuster: 

You did. Okay. So. I mean, that's really impressive because a lot of young people, when they're teenagers, are not thinking about, well, how do I view a disease is my best friend and something that's going to be positive, they would be upset about what they've lost. Right? And so that's remarkable that you at a young age were able to do that. 

And so now, this is a very rare disorder. There's 6,000 people in this country that might have this. And so what are the things that you're doing today through, well, I guess, let me take a step back. Let's talk about your company, because I think that will set the stage for what I was going to ask next. So tell us a little bit about the work you're doing today. 

Alex Brito: 

So I am officially an assistive technology instructor. I just graduated from World Services for the Blind. So I teach people who are low vision or blind how to use assistive technology or adaptive equipment. So I do that every day. It keeps me busy. And it's so gratifying just to be able to teach someone how to use their phone or take a picture or get a picture description, navigate on the computer because it just, it empowers us to know that there's more out there that we can do as far as finding employment, knowing that we're not limited to just staying home and being told we can't do anything. 

I am continuing my education and to the cat is program, which is a master's equivalent level of an assistive technology instructor, which I'll be working with other disabilities as well, as far as assessment, evaluating equipment, product recommendations, and training them or setting up their equipment so that they can live a comfortable lifestyle.

Dr. Richard Shuster: 

Outstanding. The question that I, what I was referring to is to tell me how this piece fits in is the Alexion. So tell us how tell us about the work they do and how you became involved there. 

Alex Brito: 

The work I'm doing with Alexia is, I was part of a short film called Rare Connections NMOSD where I, along with two other patients shared our stories, were able to share stories by writing a letter to ourselves about our journey and just sharing it and being able to share it to others that may be going through the same diagnosis, the diagnosis process of trying to figure out if they have this disease or even any rare disease. It's just being able to get my story out there and share it and have a voice for others.

Dr. Richard Shuster: 

Letter writing is such a powerful therapeutic technique, and it's utilized in a lot of different ways. Do you remember the gist of what you wrote to yourself? 

Alex Brito: 

My letter to myself was just explaining where I've been and where I'm at now from a teenager, that initial diagnosis in ‘97 to today and the journey I've gone through school, my guide dog, receiving my second guide dog and going through my second relapse and not wanting to give up and just being reminded that I have that family support and the care of my team to help me, treat me with what works for me so that I can hopefully, at that time, regain my ability to walk because I didn't want to lose Pony. She's my second guide. And also, just the struggle of infertility was another part of my letter that I shared. 

Dr. Richard Shuster: 

I know that you were part of this short film, and there were a couple other patients who did the same thing, they wrote the letters. So you've obviously, you're like the voice of this, right? And so you've interacted with probably a large number of people who not only have NMOSD or probably other rare diseases too. 

So, as you've connected with people from all different kinds of walks, who are going through what you're going through or things like it, what are kind of the underlying pins? What are the common threads? What are the things that you see are kind of universally connecting people as they go through a journey like this? 

Alex Brito: 

It's, we all -- we're not alone. I've learned that not only through this being able to tell my story through this with Alexion, but just social media has really connected people and being able to share and raise awareness of what's going on with not only themselves, but new research out there or studies. 

And I really find that that's amazing because we're not limited to just what we hear from just our doctor, who, well, I'm not saying does not know anything, but it's just maybe they haven't caught wind of this new treatment being done that could help us 

Dr. Richard Shuster: 

Make sense. So I've been really excited to kind of find out about this piece, which I also kind of kept out of the bio, because I knew I wanted to bring it up later. But you were the first blind woman ever to earn a yellow belt in Krav Maga. And you're also a power lifter. So I know you said that you were always in sports. That was a big part of your youth. When did you start doing the Krav Maga and why that specific form of martial arts, if you recall? 

Alex Brito: 

So that was in 2015 and it was ad that I came across on Facebook and it was a six week woman's challenge and they said functional fitness, which is a formal version of a CrossFit and self-defense. So I reached out to the instructor and asked, kind of told him my story, said I'm blind, and just wondering, because I've been turned away from gyms. I will be honest, I've been turned away because of my disability, and told him this is what's going on, so I was wondering if you could teach me or train me, and he's like, well, what's the problem? I was like, oh, okay. 

So he introduced Krav Maga. That's what he teaches. And I fell in love with it, just that feeling of being free, empowered, strong, was amazing. And so I trained for eight months and got my certification, which was a four and a half hour test of nonstop combatives. And so it was just such a rewarding feeling to be able to do that. And they really didn't modify anything for me. So that was really great to just feel involved and not be separated because I'm blind. 

And then with the functional fitness, we did a lot of box jumps and just, I guess, picture CrossFit, but just really watching our forms. One of the instructors, Stephanie, she got into bodybuilding and powerlifting. And she said, “Hey, ladies, I'm going to start a little side group. Anyone want to join?” And I loved being able to lift things again. It was just a recall of where I was, wheelchair bound at one point to where I'm at now and being able to do that and just see what my body can do, but listen to my body at the same time. 

And so that's where she started a little group, Babes and Barbells, and started lifting there for a while. I have taken some time off of it just this year because there’s just some issues, but really, really love, love that part of my life. 

Dr. Richard Shuster: 

I mean, you're smiling. You're beaming as you're talking about it. The power lifting I can conceptualize, right? Even without site, grabbing the bar, doing the thing. But you said that they didn't modify anything for you in your Krav Maga training. And in your certification, it was a four-and-a-half-hour experience where you were doing these combatives. So talk to us about what that is like. And I know not everybody is maybe familiar with Krav Maga, but I think everybody probably has a base understanding of martial arts. Right? 

Alex Brito: 

Yeah.

Dr. Richard Shuster: 

So how do you -- talk to us about what that's like, without your site, how you navigate that?

Alex Brito: 

So basically, they're just setting me up. And of course, they're giving me verbal cues of where to go. But it's just listening to my environment and having the demonstrations, the choke hold, how to get out of it. And then we have these one-on-one rounds. I guess you'd say partnering you up with someone and kind of go at it. I guess you'd say. But they say -- I guess they said I had an advantage because someone can come at you and put a bag over your head or lights out and you don't -- people tend to freeze with that because they see it coming and it's, uh-oh, now what, I can't see it. And I always chuckle when I hear people say, oh no, the lights are out, I can't see. 

So Eric's always told me I had that advantage of being able to just really listen to my surroundings. And also, my reflexes, he said were a lot faster than your average person because actually he didn't know why that was but he just thought that was really neat that I could get out of a choke hold or and feel someone coming at me, or if they got the choke hold on me how to get out of it, or a bag or something. So I guess -- I hope I answered the question, but -- 

Dr. Richard Shuster: 

You did. And I mean, we know scientifically that other senses improve when one isn't there. So your hearing is probably better than most people. Your ability to sense things is probably better than most people. So that's kind of what happens. 

I want to bring this back kind of full circle because you started this journey as essentially a child who had a very supportive, loving family. You said that they -- for pity to you, and as supportive as they were, it still took six years to figure out what was happening with you. So, what would you say to somebody listening to this today if they or someone they know or love has health issues that their doctor has not been able to figure out what's going on? What would your advice to them be? 

Alex Brito: 

It's just really network and really get out there because when I was diagnosed, it was like, okay, I have MS and didn't question it. And then once I was re-diagnosed, it was like, okay, I have this. But again, I didn't venture out there to really find a community to get more information. 

And so for someone that I would say is going through this journey of trying to figure out a diagnosis, or has recently been diagnosed is, reach out, whether it's social media or your doctor and ask them, do they know of any support groups? I mean, if you're not comfortable with what you're told, it's okay to ask for second opinion. Because again, this is your body and if it doesn't feel right, you're the one who's going to be feeling the effects of it. 

So, those are the really, the big points I would say is just, if you have been diagnosed, to reach out to a community to get that support and be able to not feel alone. Or if you're going through that journey of being diagnosed, and you're just not comfortable, and still want more answers, it's okay to follow through. No question is a dumb question because you just want to make sure you're taken care of. 

Dr. Richard Shuster: 

I think that was very, very well said. And there's two key parts. Right? And I think in our world of social media, and there's a lot that social media does that's not so great for our brains and our minds and our emotional levels of happiness, but what it can be is it can be a place where you can find those people who may be going through something you're going through. 

Alex Brito: 

Yeah. 

Dr. Richard Shuster: 

And that's important. And the other piece you said that I loved, and I might add, if you're not happy with what you're hearing, like, you're the extra and I'm saying this as somebody who's classically trained practitioner. Right? A doctor is going to be in a room with you for probably 10 minutes. Right? And you're the only one who really knows you. You're the expert on you, even though they may be an expert in a body of medicine or body of knowledge about medicine. And so it's okay to get a second opinion as you said. I would add, it's also okay to get a 3rd, 4th, 5th, 6th, 7th, 8th, 9th, 10th opinion, if you need to until you can figure out what's going on.

So, Alex, I've loved our time together. I think what you're doing is wonderful. I'm so impressed with your attitude, how you're inspiring and helping others and the things you're doing in martial arts are phenomenal. So keep doing all that you're doing. 

As, you know, I love to wrap up my episodes by asking my guests just this one question. And that is, what is your biggest helping, that one most important piece of information you'd like somebody to walk away with after hearing our conversation today?

Alex Brito: 

Again, it's just having your voice heard and just really getting out there and connecting because you're not alone. There are others that are going through the journey. And just being able to share my story here with Alexion, with the movie, has been so helpful for me to be able to connect with others and just grow friendships.

Dr. Richard Shuster: 

Well said. Tell us where people can learn more about you, where they can see your short film. Give us all that info. 

Alex Brito: 

Okay. So the film can be seen on YouTube and it's called Rare Connections in NMOSD. And they also added it in, there's two versions, one has the audio description for people who are blind or visually impaired. So yeah, that's where you could see the film. 

Dr. Richard Shuster: 

Amazing. All right. And we will have links to both versions of the video in the show notes at drrichardshuster.com. Well, Alex again, thank you for spending time with us today. You're an inspiration and I'm really grateful that you were able to tell your story with everyone today. 

Alex Brito: 

Thank you, Dr. Richard. 

Dr. Richard Shuster: 

Well, to each and every one of you who took time out of your day to listen to this conversation, I want to thank you as well. And if you liked it, if you're inspired, if you're going to go watch that video and you're going to be a voice of advocacy for somebody that you know that maybe needs a little bit of help with a health problem, go give us a follow on a five star review on your podcast app of choice because this is what helps other people find the show.

But most importantly, go out there today and do something nice for somebody else, even if you don't know who they are, and post it in your social media feeds using the hashtag #MyDailyHelping, because the happiest people are those that help others.