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This is What It’s Like to Have a Twin with Vitiligo

This is What It’s Like to Have a Twin with Vitiligo

Stitchwork of two girls with vitiligo

Living with vitiligo can be lonely – but when you have an identical twin who also has vitiligo. Texas-based sisters Micaela and Emily Cantu both got vitiligo when they were eight years old. Today we’re asking them who got it first, and how having a twin influenced their experience with the condition.

Names: Emily and Micaela Cantu
Age: 23
Hometown: Mission, Texas
Years with Vitiligo: 16

LD: Tell us about your life as twins.

MC: Emily and I are identical twins. We are best friends, even when we don’t like to admit it. We are extremely similar – finishing each other’s sentences and all that. Being the second born, I’m a bit more reserved. I like to observe before I jump into anything.

EC: We for sure have similar interests and hobbies, however at the core, we’re polar opposites. I’m the extravert. At the end of the day, Micaela is my biggest supporter. She understands me completely. Of course we’re best friends.

LD: Of course, we have to ask – who got vitiligo first?! And are your spots identical too?

EC: I got vitiligo first! At the time, we were around 8 years old and playing little league softball. We first noticed it on my chin. I was the team catcher, and we thought it had something to do with the helmet or equipment I was wearing. But that wasn’t the case.

MC: I got vitiligo two months later. Since Emily had gone through the experience, I had the advantage of already knowing what it was. That typically tends to be the trend with our health. When we were 17 years old, Emily was diagnosed with hyperthyroidism. Two months later, I got the same diagnosis. We didn’t realize that having an autoimmune disorder could lead to more. Today, we’re both living with three autoimmune diseases that we’re aware of – the third being endometriosis. And our spots are not identical, however they are similar. We generally get our spots in the same areas, especially when we get new ones. Emily is my fortune teller, in a way. She tends to get spots first – I’ve got a great two-month lead time as to when my next spot will arrive.

Emily and Micaela

LD: It’s so unique to see twins with vitiligo. Does anyone else in your family have the condition? 

MC: No, we don’t have a family history of vitiligo. Our dermatologist said that it was likely triggered by stress. What on earth were we stressed out about at 8 years old? I still have no clue.

LD: What was it like growing up with vitiligo for each of you?

MCWhen we first got vitiligo, it was difficult. I wanted to do everything I could to get rid of it. We tried topical creams, make up and UVA/B light treatments. I remember using a dye stick when I was in 5th grade because I started growing white hair from a spot on my head. Kids started to notice and make remarks. They would ask questions like “What’s on your face,” or “Why didn’t you rub in your sunscreen?” I didn’t take it as bullying – they were just curious.

EC: Getting it at such a young age was better in my opinion. Not only was I too young to truly be vain, but I also had a twin sister going through it at the same time as me. I had someone who looked like me and could identify with my experience. At first, we tried to hide it and cover it with makeup. We went to the dermatologist often for treatments, but as kid, I was so annoyed with using topical creams and hated standing in the light booth for treatment. We eventually stopped treating it and just embraced it.

LD: What was your family’s reaction to your skin?

MC: We grew up with such a great and supportive group of family and friends. They made us feel equal and unique and gave us no reason to feel inadequate. My mom was so supportive and is a major reason as to why we grew to accept and embrace it rather quickly. She never failed to tell us how beautiful we were and how having Vitiligo made us that much more special. She supported us wanting to cover our spots and supported us not wanting to cover them. Having our mom remind us that we were created for a purpose bigger than our skin was and still is a huge comfort. 

LD: How do you each feel about your skin today?

MC: Today, nearly 80% of our skin has lost pigment due to vitiligo. The more my pigment fades, the more I find myself thinking about vitiligo. It’s hard to see my skin change month to month. Even though I love my spots, I get a bit sad when they change. More often than not though, I love my spots. I wouldn’t change having vitiligo for the world. It’s helped me realize that beauty comes from within.

EC: I’m slowly becoming one color again. That kind of makes me sad. I like being two colors. Vitiligo is always on my mind. Did I put sunscreen on today? Do I need to pack a hat or wear long sleeves? How can I nicely say to someone, “I don’t want to sit outside because I’ll get a sunburn” even if it’s a cool day? However, I believe vitiligo is something I’ve fully embraced. I’m overwhelmed with pride that I get to educate others about this condition now.

LD: Tell us about yourselves – what do you all do?

MC: I currently work for the coffee company of my dreams – Greater Goods Coffee Co. in Austin, TX! I graduated from The University of Texas at Austin with a BBA in Management. I love all things theatre, live music, people, and coffee. I’m an avid babysitter – I love kids and am so grateful to be a part of their lives. Emily and I are extremely family-oriented. We are blessed to have a supportive and loving foundation. We have a baby sister who we love so much – she’s six years old and is incredibly smart and kind. 

EC: Same. Like literally – same. I also work at Greater Goods Coffee Co. I also just graduated from UT Austin with a degree in Business Management. And I also love the kids.

LD: How has having a twin with vitiligo changed your experience with it?

MC: It’s a huge help. I don’t feel alone in my insecurities. I don’t feel isolated and weird. I think that we are incredibly lucky to have each other. Vitiligo can make you feel so different and knowing that Emily knows how I’m feeling, down to the core, is incredibly comforting. Not everyone gets a buddy when experiencing change. 

EC: Having someone who looks just like me makes having vitiligo extra special. I don’t feel all that different. I don’t think she’s ugly or abnormal, in fact quite the opposite. It’s been amazing to have a partner in experiencing something so physically altering. It’s incredibly empowering and special. 

LD: What’s it like when you are together in public?

MC: I don’t think we are fully aware of other people’s reactions when we’re in public; at least not at first. When we were younger, we got stopped so often that stares don’t phase me as much. In the summertime, we definitely get more stares because the contrast between our spots and “normal” skin is more obvious. I don’t think we’re as aware of stares or reactions because it’s “normal” for us as twins to be noticed more. As our spots grow, so does the assumption of stares being related to vitiligo. My favorite thing is when we see someone else with spots. There’s this crazy sense of belonging that we feel instantly. Just a smile and a head nod to the individual does so much for the soul. What a gift vitiligo is for us.  

EC: When we go out, I expect to answer at least one of two questions: “Are y’all twins?!” or “Do you have that skin thing?” The older I get, the less I notice the attention. When we were younger, I remember my mom’s best friend being so annoyed with the twin question that she told us to start saying “No duh!”…as 5 year olds this passed for cute or funny…not so much anymore haha! A huge part of me wants to have a shirt made that says “Yes, we’re twins.” 

LD: What’s one thing you want others with vitiligo to know?

MC: We met some of our dearest friends because of our spots – through in person events and social media. Knowing other people with vitiligo breaks down the loneliness. Having a community of people who look like you is a true gift.

EC: Also, if you have vitiligo, check your thyroid!

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