 Today on my show we'll be discussing the silent leader living with superficial cirrhosis with our special guest Javier Supoy. Welcome Javier. Thank you Wendy for having me today. It's a pleasure and an honor. Well we're excited to get started with you and just let the world know about SS which is a superficial cirrhosis. So let's start with you and your life as a kid. Where were you born Javier? I was born in Cali, Colombia, South America. Wow and so as a kid you must have had some pets or animals growing up like every other kid. What did you have? Well I had since I was a kid I had as you can see in the in the slide a Pekingese. Her name is Mimi and she was my favorite since I was like a few months old of age. I was a gift by my mom. Wow how special is that you know and I was just talking about Pekingese dogs because we don't see too many of them these days but I remember growing up and many people having Pekingese and I think they're just adorable. So while you are growing up in Colombia Javier I know that there are many food stands and fruits are abundant kind of like in Hawaii but I know in Colombia it's even more abundant. So have you always loved to eat fruits? You know I did I love I love to eat a lot of fruit and also they're very healthy. I'm not a real vegetable eater so fruits was my best way to eat a healthier life yes. Wow and so of all the fruits what's your favorite fruit? I have many favorite foods but if I have to choose a favorite food will be mango. I love mangoes. Yeah I love mangoes too and so and then what is your most favorite vegetable? I know you don't care for them but what is your favorite? My favorite vegetable would be probably lettuce. Lettuce? Okay that's the easiest I think the least amount of taste and flavors. Okay so now let's jump ahead you're getting older in your days and I want to talk to you about your college days. So I understand that you attended college in the United States of America. Where did you attend college and how was that experience for you? I attended the University of New York and it was a uplifting experience because I graduated I skipped from sixth grade so I graduated at 17 so I was one of the youngest sophomores entering my college days and so it was a uplifting experience of all over all around it. Wow and how did you manage to study and get all that work in? It was hard but I had a goal to always move forward and grow more of a person and so it kept me motivated. Okay so when you came to the U.S. you were a young man and so did you speak English back then? I did when I was in high school in Colombia I won a scholarship and I was able to scholarship to study English so I had more I was at a conversational level in the English language absolutely yes. Wow so you came to the U.S. with a little bit of an edge over the a lot of others that just come because you could already speak English is that correct? Absolutely it is correct it was an advantage because but even though I was in the ESL program I had a conversation at a conversational level so it was it helped a lot. Of course that you know going to school I mean like we local kids we don't understand the I guess the challenges of people or the kids coming from other countries they have to not only be with peer pressure and get associated with the styles and the culture and then the food and missing their home but the language you know we don't even think how difficult that is and that must have been so difficult for you even with English as a second language and you being able to speak and compete with English it still must have been very difficult for you would you say Javier? I would definitely say so because even though I spoke English I still had a Spanish accent a Colombian accent when I spoke the language because you don't use it as daily so when you come here they can tell that you have an accent a Hispanic accent so they they all want to know okay you're not from the US so it was different it was difficult to fit in absolutely. Okay so I'm going to ask you this question and it's off the chart but you know there's a lot of different South American countries and you know are there different accents from all the different countries and can you recognize like if a person is from Peru or if a person is from Venezuela or Colombia can you recognize the different accents? Absolutely absolutely there is 33 countries in Latin America and you can tell who is from Cuba who is from Argentina who is from Peru and even within our own country we have 22 states in Colombia we can tell who is from the north who is from the south so absolutely you can tell the accents and the dialects actually yes. Wow that's amazing so let's move further I know that you did attend and graduated from State University of New York at Garden City Long Island New York so what degree or degrees as I've learned did you achieve there? One of my my first degree because I've always loved science I got a degree in biological sciences and that gave me that open the opportunity to do some things with it and then my second degree was in radiation therapy which was another goal that I presented to myself. And so that's those are not easy subjects but so I've got to give you kudos and a pat on your back coming in as an ESL student striving to be better and wanting more and not only just getting one degree you didn't settle on that you went for another one and so I'm just amazed and truly amazed and the perseverance that you have I'm just I'm so grateful to just know you so I want to ask you how was your life as a radiation therapist? Well my love of the radiation therapist taught me a lot it taught me the sensitivity how sensitive our bodies can be the sensitivity of enjoying life to the best and don't take anything for granted and try to keep and I don't mean this in an indirect way or in a bad way keep your vices away from you smoking drinking drugs etc etc because that can lead to a lot of right and so that's that's the key I think that's what really propelled you on a straight forward line to getting your first and second degree getting to where you are in life is because you didn't have such vices and such great advice that you're sharing with all that or watching and that those vices will distract many and the fact that you have you didn't have those vices and look at what he got for you and so as a radiotherapist I want to just ask you did that open many doors for you as a radiation therapist? It sure did it opened many doors it allowed me to travel the US and it opened the doors that I was looking for which was to look and change weather the weather because I didn't like the cold weather in New York so and one of the weather that was the main thing to open doors for me and it sure did it open many many doors absolutely wow I mean and what a feel to get into and we'll talk about that later because I know we got so much more exciting things to talk about as far as you're where you are right now so I want to just ask you from the time you were in New York I know you must have had mixed feelings about New York but when did you arrive in Hawaii? I arrived in 1992 in Hawaii wow and so how did that happen I mean how did you decide to become a part of Hawaii's Paradise? I came to Hawaii on a contract for six months the Queens Medical Center brought me here and then after the six months I guess the Lord had a plan for me and they all there was an opening a permanent position at the Queens Medical Center and I took it wow and so coming from New York first coming from Columbia they're now going to New York I mean that's a whole another ball of wax going to New York so not like Columbia beautiful Columbia but now you find your way to Paradise as I call it and you must reflect that it has so many similarities to home Hawaii and Columbia so do you really love Hawaii and what are your thoughts about just being here in Hawaii? I really really love Hawaii it reminds me of of Columbia because to me Columbia is another another paradise and just like Hawaii in the equator same same weather same very much costumes the same the same excitement the same vibrant life that I was used to in Columbia and I know the food is outrageous and just different flavors and just styles of cooking I was very honored to have a been a guest on a Peruvian ship and the Peruvian cuisine was out you know just outstanding and tell me about a little bit about your your Colombian dishes what is your favorite dish that you miss back home? In Columbia we have many fine dishes but my favorite is called plato montañero and what it is is like a treat it has rice it has bean it have like a chicken cut little beef cutlet it has avocado it has an egg and it's huge and it's like it's huge that's all I can say it's like a little bit of everything in one plate sounds nice and healthy and that's the best part about it all you have your proteins you have all the colors and that's the other thing is not only is it tasty it's beautifully arranged and I just love all the colors of the the food and the culture so now here you are you've moved to paradise you're having a great time so I want you to talk about what happened to you in the year 2011 that turned your life 360 degrees around. In 2011 I had decided to go for my third degree which was American studies at UH Minoa and then I was like two weeks within the semester I started feeling dizzy I started losing my hearing, having vertigo, having atasia, etc etc so I knew something was wrong and between I almost didn't finish the semester and by the time the semester ended at the end of May I ended up in the police medical center emergency room. Yes and so you went there with all these symptoms and when what happened what did they tell you there in that in that ER? Well there I arrived there as an emergency because I fell down on the street so I was rushed to the emergency room they did all types of scans I told all the doctors that had a tumor they didn't find me until one doctor did a spinal tap and they noted that there was a hemorrhage to the spinal fluid in my spinal cord which has caused a hemorrhage to the brain and that's where the problem, the big issue, the big gigantic problem began. Wow and so this gigantic problem they already put a name to what you had with all those symptoms? Yeah I yes they they they knew there was a we I was diagnosed with superficial cerebrosis in in January 2011 but we didn't know the source so this confirmed that I had a tumor which I was right the question is where is it? Wow and so do you feel that your degrees in your you know in your studies and helped you to self diagnose even before it was detected? Absolutely I think the fact that I knew anatomy and physiology and the fact that I studied the specific tumor that I was diagnosed with gave me the extra knowledge that I would can sense my body that there was a tumor and they did find it between spinal uh lumbar number one and spinal number two, number two two inch tumor yes. And so that was amazing too because now you have these symptoms and you go to the doctors I mean the ER and of course with your your medical knowledge behind you and guiding them so I mean sometimes some simple conditions and diseases they can't diagnose but you were it was it was a blessing in a way that they were able to you that you were able to come out of there with that diagnosis I'm just I mean right it's it's to have the symptoms and the condition is one thing but to put a name to it then that's when you can start even further researching am I correct? Absolutely it was at that time in 2011 and they didn't know anything so when I was diagnosed they didn't they didn't say anything. Wow and so you know living with superficial cirrhosis how have you adapted your life while dealing with the symptoms of this condition? It hasn't been easy since then and it has it was very devastating to me to go from being super active to not being able to hear to be to be DC 24-7 to be tired a lot so it was difficult to and have a cane for the most part so it was very difficult to adapt but I knew I have been chosen to be where I needed to be and this is the beginning of that. Yes and I also feel the same way that God has chosen such a strong educated man that will understand what is going on with his body and know this condition and remember now everyone it's not a disease it's a condition and a condition that you you could self-diagnose and you could understand so what what does diet have anything to do with becoming stronger or having the symptoms less severe like what you eat does it really matter? I believe I've been very very strong since I was a kid and to me that is part of continuing with life in hard moments and also the fact that I've always been very inquisitive and also I don't give up and also I'm very positive very optimistic and I find an excuse to celebrate life and being a radiation therapist gave me a whole outlook of what it is to really enjoy your life so this was like a preparation for this event. Wow and you know when I was doing a little bit of research on superficial cirrhosis I know that they mentioned um it's like a rust a rust in that certain area and so can you just elaborate on that word rust and why they refer to this condition as a rust in your body? Well well our body has a something that's called the brain barrier and allows it doesn't allow anything to go there the only thing that allows that goes through is viruses bacteria alcohol and in this case iron and the iron is what was deposited in my in my brain tissue which became rust and that's what that caused the damage to the brain tissue. Wow so you would probably have to look into programs of detoxing and trying to get the metals out of your body is that correct is that something that you could do? Oh I was placed in a in a medicine that was they were trying to call periprox anterior supposed to remove the iron from the brain tissue but in my case it didn't do a cause more problems so I decided not to I stopped it three months after. Well luckily you're one that listens to your body and not listens to just what they tell you to do and that's very important because only you know what's going on in your body and they could pump everything into your body and if you didn't if you didn't deny it and stop it you would be suffering and they wouldn't even know because you would have thought oh well this is what my body is supposed to feel all this pain and this uncomfort so but the fact that you know your body so well and you said no to that and now I know that you're going to take measures into your own hands and that's why you stay so focused physically you're active and mentally you're always being stimulated and you know just just building yourself up and I think that's your best defense and as I um I asked you before and you said your knowledge is so important here and knowledge is power and that's why you're going to persevere and I know that you want to bring more awareness to more people out there so I just want to ask you and I want to ask you to please share your plans with us on how you will bring awareness of this condition called superficial cirrhosis. Right now we're still taking baby steps because there is no there's no federal funds there is nothing out there so my primary focus is to bring awareness to the state of Hawaii. As of today, April 6, 2020, the only person with this condition at the Neuroscience Institute at the Queens Medical Center so I'm planning to bring awareness statewide uh contact the Hawaii Congress the city council the mayor the governor after that I want to go national and then after that I want to go worldwide. Wow and so I know um when I asked you to come on to the show you're very excited because it's part of your your your plan to start with being heard and so we need platforms like this Think Tech Hawaii show that will bring to light more knowledge and information about superficial cirrhosis and so as excited as you are that to be on this show I'm very excited that you are here as well and I also know that you did some work for our our our new mayor Rick Masciardi and I know that um you worked on his campaign and you tell me a little bit about I know that there was a video that you made while working with him yes I was in part of his campaign which began in July and he I he got I mean he got an interest in my condition and he did uh as an episode uh living in Hawaii and he wanted me to mention that so everybody that went into the website uh Rick Bargliade from mayor.com can see it and they took pictures and they talked it it talked about me and superficial cirrhosis so that was the beginning yes wow and that's great publicity I mean to be on that platform um and having the mayor of course getting into office and learning about the different issues of all people because it could happen to anyone and I know it doesn't discern on color race religion or anything like that so good for you just continue persevering and um I know the word will get out and you're going to help so many more people so I want to I want to I have to put this slide in because on the next slide you're shown here on the snow with a cane I guess that nothing can hold you down and then um I just want to ask how often are you needing to use the use of your cane? My cane my cane is like my best friend I use it outside when I'm outside 24 seven it's like the best thing I could have especially to hold to it when I'm walking because I have the dizziness and the vertical 24 seven and the medication which is supposed to help can also give a lot of dizziness so that's my my best friend outside of the home inside their home I don't really need it because I'm always holding them to things. Very good so again you speak of your buddy and I know we all need a buddy so when I spoke with your buddy Nate he says that you're still very active and that and that shows us all of us your resilience which inspires him as well as many others so what keeps you going Javier? What keeps me what keeps me going is I life is precious I enjoy life and I learn in my radiation therapy years that life is very tangible and there is no reason why not to enjoy it and you need to surround yourself with beautiful people like Nathan who's always been there with for me since 2006 plus I live in Hawaii I mean not everybody gets to live in beautiful Hawaii and then I surrounded my I was given five years of survival I surpassed that they said I would never walk again I surpassed that so I I just love life I love it. Hallelujah and I know you know people out there they don't know so how much you just have to how much of a struggle I should say it is for you to just even do this interview now guys out there he is deaf in one ear and I want to say 50% use of the other ear but yet he's trying so hard and focusing to hear the questions and the conversation that I'm asking of him so sometimes it seems like there's a drag time it's because he's trying to hear it and process it and you know what Javier two thumbs up because you're doing a fabulous job and I know that God picked the right person because you got the right heart and if it wasn't in front of this camera I know your voice is even stronger and so that's what's really exciting is that you will continue on to get that that voice out so I want to just share with you that I met you many years ago because you you like myself are very active with the Miss Hawaii USA and the Miss Hawaii pageants and so do you miss I just want to ask your personal thing do you miss working with the pageants now that they're a little bit on hold I kind of do but that's another goal of my life I'm going to become a director for an international pageant in a few years I'm working on that as we speak yes very good and that's exciting as well so I I know I sat with you and when he came to me and we were talking story what was really neat is you see my beautiful brooch here I owe it's here my beautiful brooch he gave this to me and he didn't know that I like the color blue and I'm going to wear this as often as I can and you're going to be right here with me in my heart and I will be sharing your love and your desires to be more of a voice and encouraging and praying for you every step of the way so if we don't talk to you directly Javier can you tell us how can we get more information about superficial cirrhosis the the best way the best way to find out about superficial cirrhosis is to go on facebook and look for superficial cirrhosis research alliance that's the main umbrella and then right under it is you go superficial cirrhosis research alliance slash hawaii that's where I may come in but if you go to the main one that's where you want you will get every information about superficial cirrhosis or you can email me at waikikilatino.com very good and you know people you've got his email address go to the facebook site and get this information because if someone you know has some questions about what they're experiencing if they have these kinds of side effects or symptoms please feel free to just source Javier because that's his heart he really truly wants to be there to support anyone that is or think is experiencing something like this so I'm just going to have to say Javier our time is over and we're going to have to leave everything right here but you've been watching Taking Your Health Back on Think Tech Hawaii today we've been discussing the silent leader with Javier's deploy thanks for participating Javier and thanks to our viewers for watching I'm Wendy Lowe we'll be back in two weeks with another edition of Taking Your Health Back Aloha everyone and Mahalo Javier