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Devon Preston

July 11th, 2019

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Cosplay, Tattoos, and Muscular Dystrophy: Meet Amber Guzman

Cosplayer and all-around artist Amber Guzman discusses mobility, tattooing, and the healing powers of art

As able bodied individuals, we often take advantage of daily tasks that we’d never fathom losing the ability to do independently. However, for model, cosplayers, and artist Amber Guzman, she loses mobility every month because of Muscular Dystrophy. Muscular Dystrophy is a group of diseases that cause significant muscle loss because of genetic mutations that interfere with the production of proteins needed to form healthy muscle.

But, despite her illness taking her ability to walk and live independently, she’s a thriving creator. Guzman has developed an online following from her incredible cosplay designs, which she crafts herself, and stunning makeup creations. Her social media fame has given her more than just an outlet to express her creativity and educate her audience about MD, but also an electronic wheelchair gifted by her followers.

We had the pleasure of speaking to this multi-talented artist to learn about her daily life with MD, why she became a part of the cosplay community, and of course, the story behind her growing tattoo collection.

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Some people might see this photo and not even know that I am a disabled and use a wheelchair. Looking at me here you wouldn’t be able to know that I can’t walk safely on my own, that I can barely move my arms some days and that I have to depend on others to help me do simple things like brush my hair or change my clothes. I have been dealing with my illness called Muscular Dystrophy since I was diagnosed in 2012 but no matter how badly my illness progresses or no matter what ability I lose next I will always do my very best to continue to do what I love!!! Art, modeling and cosplay have saved my life more than once! Being able to create something out of nothing and use my talents has always motivated me to continue to do my best. So please don’t let an illness, other people or yourself hold you back from doing what you love to do!!! Reach for your dreams and don’t be afraid! You have no idea who you might inspire just by being yourself and using your talents • • • • • • Photography Studio @fdphotostudio • • • Clothing from @dfrntpigeon • • Photographer @xoch562 • • • • • #bodypositive #musculardystrophy #wheelchairmodel #alternativegirl #disabledmodel #tattooedgirl #legtattoo

A post shared by Amber Guzman (@amber_kohaku_chan) on Jun 11, 2019 at 5:22pm PDT

Tell us your Muscular Dystrophy story. When were you diagnosed?

Ever since I was little I was always physically thin. I had trouble running and I would walk with a swish in my hips like a cartoon girl in high heels. My parents where going through a bad divorce at the time and didn’t pay attention to what was going on. They thought I was physically tired because of depression from the divorce and not because of this rare hereditary illness that wasn’t well known at the time. I wasn’t diagnosed with MD in until I was 25 years old, around October of 2012 after a muscle biopsy my doctor suggested I get because he immediately knew when I walk in (this is when I was walking) that I had Muscular Dystrophy.

How did it affect you growing up?

I didn’t know I had MD till I was older, but I always knew that something was wrong with me. I would have trouble walking or keeping my energy levels up like my friends while I was at school. I remember I would have to tell my P.E teacher that my mom said it was ok for me to sit out on the mile runs because my legs hurt. I would have to sign my dad’s signature without them knowing to get out of it because I honestly couldn’t run if my life depended on it. It made classes harder for me to pay attention to and teachers disliked me because I would be exhausted after lunch or P.E. I also got picked on for being too thin. I would hate that I felt different without knowing what was really going on with my body. I loved dancing and gymnastics, but I just couldn’t keep up. Having to stop all physical activities was hard on me as I grew up, but without that I think I would have never found my love for art.

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”I like to party and by party I mean watch Anime!” Hahha best shirt ever for the month of AniMay! You can find it and tons more awesome anime shirt now @hottopic ! • ❓What has been your favorite Anime so far this year? ❓ • • • • • • #htfanatic #animay #anime #manga #animegirl #jfashion #tshirttime #wheelchair #disabledmodel #musculardystrophy #livingdoll

A post shared by Amber Guzman (@amber_kohaku_chan) on May 15, 2019 at 5:03pm PDT

How does it impact your daily life?

Many people forget how much we truly do with the muscles we have. Because Muscular Dystrophy slowly atrophies certain muscles in your body, I lose an ability I can do for myself with each passing month. I have to now ask for help with simple everyday tasks, like brushing my teeth, holding my arms up to wash my face, going to the bathroom, getting dressed, turning over in bed, and even just scratching an itch. Combing my hair is so hard and I never used to have trouble with it when I was younger. Eating has now become harder, only because I have to drink fluids to help the food go down because that is a muscle too. I actually eat a lot and enjoy cooking, so my thin frame has minimal to do with my eating habits. To be honest, I went from being very independent to having to put my trust into the ones closest to me, which at times is hard to cope with because no one wants to feel like a burden in any way.

What’s your current level of mobility?

Right now, I can thankfully still stand up in one spot with the assistants of a person, wall, or holding on to something stable. But walking is very hard for me and I can’t do it on my own, so I use an electric wheelchair that was kindly donated to me by my fans on Instagram! It has changed my life and helped me go on more adventures I wasn’t able to do beforehand. I can do my makeup, but I use a table to help keep my hands up. I also build cosplay costumes which tend to take me longer to do, but I always get them done on time.

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(Last Update) Nothing should stop you from feeling confident and sexy but there are times where it might happen in unexpected ways. When I first started using a wheelchair I would constantly get asked if I still feel sexy and confident with my body? And I would always say “Hell yeah I do!” Being in a wheelchair wasn’t stopping how I felt about myself but what was making me feel a bit shy was my acne. Being a cosplayer and having to go to conventions to meet people face to face or have my photos taken by photographers that might not edit my acne out of the photos would have me nervous. But this year I am ready for this cosplay season thanks to the help I have gotten from a few amazing products but one in particular, an amazing super hero product I have been talking about and doing updates on here on my page called #goodgenes Lactic Acid Treatment from @sundayriley who is teaming up with Marvel for a special limited edition packaging of this amazing product! ☺️ I always give my honest review of any products I show on my page and this amazing skincare line has been the one to make the most visible change I have ever seen in all my years of searching for a holy grail product to help me with my acne. I have been using a combination of these products from Sunday Riley each morning and night for about 2 months and my skin is smoother, younger looking and more healthy than it’s been in years. The natural ingredients such as Blue Agave, Prickly Pear, Turmeric, Cold Pressed Avocado , Blackberries and tons more had me loving the fact that they keep harsh chemicals out of their products because it didn’t cause my sensitive skin to break out. If you have been looking for something to help you with your skincare needs please check out the products of Sunday Riley on their official website or in stores at Sephora . ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ They also talk about many wonderful topics on their Instagram page such as what products to use when pregnant, ways to change up your style or different wonderful healthy facts! • • • • • • • • Photography studio @lavishstudios And Photographer is @xoch562 • • • #sponsored #sundayriley #skincare #ad #bodypositive

A post shared by Amber Guzman (@amber_kohaku_chan) on Apr 5, 2019 at 12:08pm PDT

How is art a form of therapy for you?

It allows me to express myself and my emotions, whether they are good or bad. Having an illness that limits you can be very depressing at times but art, makeup and cosplay allow me to release all that hurt or happiness. Holding emotions in, especially sad ones, is a killer that will definitely get the weaker hearts. Art is definitely a therapy that has saved my life countless times and helped me meet so many other creative people.

What led you to start cosplaying and modeling?

My mother had both me and my sister in modeling competitions, photo shoots, and runways since we were younger. I have always loved modeling and I loved portraying a certain look or character, because I have a passion for drawing. Bringing these characters to life is what modeling and cosplay is all about! It’s a moving artwork or a beautiful moment captured in a frame. Plus, building and completing a cosplay costume always makes me feel this huge feeling of accomplishment. Cosplay very motivating and empowering community as well.

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❤️ Items that bring you back to your childhood are some of my favorite items to collect! Polly Pocket was super popular in the 90’s and early 2000’s when I was a child! ❤️ I remember getting one of her toys when I was younger and playing with it all day! It was a little house inside star shape case! ⭐️Me and my sister would combine our houses together and trade our accessories that came with the sets! Years later Polly Pockets is celebrating their 30th anniversary with new style and items! @hottopic is selling many awesome products from this collection and they even have Polly Pocket makeup ! It honestly works like a charm and the lipstick tastes like candy YUM! Definitely check out Hottopic’s collection of Polly Pocket accessories, clothes and makeup at their shops and online stores! •••••••••••••••••••••••••••••••••••••••••♥️ • • • • • • • Polly Pocket Heart Shaped Lipsticks and Eyeshadow sets from @hottopic • • Dress from @youvimi • • Photo studio @fdphotostudio • • Photography by @xoch562 • • Wig from @anibiustore • • • • • • • • ••••••••••••••••••••••••••••••••••••••••♥️ #htfanatic #htfandom #pollypocket #lipstick #makeup #livingdoll #kawaii #doll #jfashion #disabledmodel #kawaiifashion #musculardystrophy #elegantstyle #sheerdress #himekaji #twotonehair #pink #pinkhair #femalemodel #bluehair #mua #motd #ootd #makeupartist #sponsored #promoter

A post shared by Amber Guzman (@amber_kohaku_chan) on Feb 18, 2019 at 11:33am PST

Which animes provide the most inspiration for your looks?

Anime series have been coming out more rapidly than they ever did when I was younger, so it’s hard to pinpoint a favorite nowadays. But I have a love of putting a twist on beloved characters, such as an evil version of Sailor Moon or converting my wheelchair into Elias from The Ancient Magus Bride so I can be Chise. These animes are either classics that will forever be loved or ones that are so well done that it will bring you to tell your friends about it that don’t even know what anime is.

Take us through the daily life of Amber Guzman.

I am now married and living with my husband and his beautiful family. His mother comes in every morning after we wake up to kiss my head, while making sure to ask if I am feeling good and if I slept well. By morning, the whole house has a beautiful smell of traditional Mexican dishes his mother makes for that night’s dinner. Then, soon after waking, my husband and I find out what adventures we will get into for the day whether it be doing a photo shoot, hanging with friends, or building a new cosplay costume. But, sometimes we just feel like having a lazy day at home and that is when I will spend time drawing or playing video games. I do all of this with the help of my husband, who can’t work because he is my caretaker. At least I get to spend each day with the love of my life/best friend!

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Yesterday was such a beautiful colder day here in California! I love this kind of weather because of hot drinks, cozy blankets, sweaters, the holidays and no more mosquitoes! I have gotten so many mosquito bites this year!!! Who else has gotten bitten bad this year by those sneaky pest ? ▫️ ▫️ ▫️ ▫️ ▫️ ▫️ ••••••••••••••••••••••••••••• ▫️ Photography by @thedgax ▫️ ▫️ Kousaka Kirino Wig & GEO CK105 Circle Lenses by @uniqso (Use discount code Kokochan) ▫️ ▫️ Shorts by @youvimicos (Use discount code amberkohakuchan) ▫️ ▫️ Bodysuit by @dfrntpigeon ▫️ ▫️ ••••••••••••••••••••••••••••••••• ▫️ ▫️ ▫️ ▫️ ▫️ ▫️ ▫️ ▫️ ▫️ #livingdoll #bodypostive #disabledmodel #musculardystrophy #doll #alternative #atlernativegirl #alternativefashion #ootd #tattooedgirl #sexy #alternativemodel #goth #grunge #fallfashion #outfit #tumblrgirl #tumblrinspo #jfashion #gothgirl #femalemodel #pastelgrunge #aesthetic #legs #anime #pastelgoth #prepstyle #outfitgoals #gothgoth

A post shared by Amber Guzman (@amber_kohaku_chan) on Sep 26, 2018 at 10:30am PDT

What was your first tattoo, which is your favorite tattoo, and what’s your most recent tattoo?

My first tattoo is of a woman who is wrapped and almost tangled in her own hair. It meant a lot to me, because it represented being trapped by my own problems in life that were holding me back and having to break through them. I got it when I turned 18 by a friend of ours who was a tattoo artist.

My favorite tattoo is the Sailor Moon symbol on the center of my chest. I got it back when my husband and I were learning how to properly tattoo and the best way to practice is with friends and family willing to let you use them to test your skills. Sailor Moon was the anime series that introduced me into that world, so it needed to be close to my heart.

My most recent tattoo would be a small bunny on my right wrist. It represents my father and it also has small stars next to it that each represent a member of my husband’s family. My husband did this tattoo as well, when we were learning how to shade.

Does MD impact the tattoo process, if so elaborate?

Tattooing is definitely different, painful, and more difficult for people with MD. Because we lack muscle mass, our bones are closer to the skin’s surface. Imagine what it’s like getting tattooed on areas like your wrist, collar bone or elbow where there isn’t a lot of muscle mass in the way, that is what it feels like for me when getting tattoo while having MD. Outlines are easier for us to get, because it’s less of an open “wound” to heal but shading or color tattoos can be bad for people with MD because we take longer to heal after cuts of any depth or size. Also stretching the skin, which is a process tattoo artist have to do when tattooing can cause the skin to tear if the person has MD because some versions of MD can make the skin more sensitive and delicate.

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The weekend is finally here! I hope you all have fun these next days ! It’s going to be a super hot Friday for me here in California! ☀️ How is the weather for you? Is it already feeling like autumn where you live ? PS: I want to thank again everyone who helped me last year get this amazing new wheelchair! It is still changing my life each day ! ▫️ ▫️ ▫️ ▫️ ••••••••••••••••••••••••••••• ▫️ Photography by @thedgax ▫️ ▫️ Kousaka Kirino Wig & GEO CK105 Circle Lenses by @uniqso (Use discount code Kokochan) ▫️ ▫️ Shorts by @youvimicos ▫️ ▫️ Bodysuit by @dfrntpigeon ▫️ ▫️ ••••••••••••••••••••••••••••••••• ▫️ ▫️ ▫️ ▫️ ▫️ ▫️ ▫️ ▫️ ▫️ #livingdoll #bodypostive #disabledmodel #musculardystrophy #doll #alternative #atlernativegirl #alternativefashion #ootd #tattooedgirl #wheelchairmodel

A post shared by Amber Guzman (@amber_kohaku_chan) on Sep 14, 2018 at 10:34am PDT

Where do you hope to be in one years time?

I would hope to get more involved with motivational speaking and be able to have an opportunity to inspire more people with disabilities to reach for their goals. I also see myself getting into more unique ways to model and cosplay and collaborate with other amazing artists.

What else should our readers know about you?

I actually use to be a tattoo artist before the tattoo machine itself became too heavy for me to properly hold safely. It was such a huge passion of mine and I first started to learn when I was visiting Atlanta, Georgia for almost a year. Unfortunately, the man I was apprenticing from was a bit of a prick but I learn some great techniques from him before having to quit.

When I came back to California my husband and I continued to learn how to properly tattoo and would practice on each other and friends before getting licensed and opening a business. We tattooed for a few years before stopping, but it was an awesome yet crazy experience.

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Succubus, Vampires and Mermaids are my favorite fantasy creatures! What are your favorite mythical creatures? ▫️ ▫️ ▫️ ▫️ Photography by @fatmanphotography ▫️ ▫️ ▫️ Headpiece,Gloves and Wings made by me ▫️ ▫️ Dress designed by me and sewn by my husbands mother ▫️ ▫️ Lolita Wig 805A-S from @uniqso (Use discount code Kokochan) ▫️ ▫️ Stockings from @hottopic ▫️ ▫️ ▫️ ▫️ ▫️♥️ #succubus #lolita #bjd #livingdoll #cosplay #doll #cosplayersofinstagram #cosplaygirl #cosplayer #demon #horns #flowers #butterflies #cosplayphotography #ax2018 #animeexpo #animeexpo2018 #disabledmodel #musculardystrophy #lolitadress #dress #jfashion #wings

A post shared by Amber Guzman (@amber_kohaku_chan) on Aug 13, 2018 at 10:11am PDT

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